It wasn't that great of an article, and in fact on my site, I kind of ripped it apart.
However, the reasons I think it wasn't all that great differ from yours. My issues with it were that it did focus on boys born without a penis without really getting into what Reiner studies. Reiner is focused on something called bladder cloacal extrophy, sometimes called cloacal extrophy or simply CE.
Kids with CE are born with their bladders outside of their body and very "undeveloped" genitals if they are a boy. I'm not even sure undeveloped can explain it--basically genitals don't form but there may be testicles. Those kids have generally been surgically sex assigned as girls due to the lack of penis. A good number of them eventually identify back in the gender that was stolen from them with surgery.
The kicker on that is unlike CAH, CE is not medically considered an intersex condition--because it is not caused by hormonal or genetic reasons. It's simply a pretty horrible birth defect and often there are other medical problems that go along with it.
While it makes a good point for not trying to surgically assign a gender, it was only slightly germane to the article.
Regarding the inclusion of CAH, it was put in there rather oddly because it was a hanging statement that didn't go anywhere.
The part about Vilain's research was good although I wish it had been expounded on. Unfortunately, my experience with him is that he isn't very good at talking to the media and as I suggested to him in a recent conversation, he should really get a media coach. One pertinent point with his research that pertains to CAH is whether there is a gender gene. If his research ever translates into human impact, it could be a good boon for us trying to change the current protocal with surgery. For instance, if you have a child that is 46-XX and the baby has the gene that makes someone male, hopefully surgery would not be considered.
I know lots of parents here think XX is girl, but it's not always the case and it's not exactly rare for the person to identify as otherwise at some point later in life. You don't see those guys here because anytime they do wander in, they get treated like there is something wrong with them or that is a choice they made and they leave.
On what the media covers and doesn't cover, you are correct that it is what sells. The media is a business just like any other.
Fact is, unless you can sell a human interest story about cortisone shots, and newborn testing, it will always be secondary to the immediate social emergency of cosmetic genital surgery done mostly for social reasons. I would suggest having cares foundation getting a media person to help them sell what parents see as more important; we've been very successful at media and as long as "our side" is better at selling our stories, it isn't going to change.
Even when attempts are made to try to stifle or suppress (there have been instances recent and in the past) it tends to create even better publicity for us. In fact, BLO will be making a press announcement this week about a recent attempt to do just that which also involves CAH. In a way, you are probably better off ignoring our media successes and spend some time coordinating your own.
I can tell you however as a media person, it's going to be very a hard sell and will take some creativity. When's the last time you saw a story about the health risks of children with diabetes? That's much more prevelant than CAH and is a difficult story to tell because it doesn't have much emotion or drama. There is no controversy in newborn testing, cortisone injections, and daily meds. To make it into a news story, you need what is called, "a hook". To really counter us, try selling a story that genital surgery is a good thing.
Even with the word intersex, try getting the docs, starting right with Maria New to change it. It's a medical word...not one from us. Ironically, I am capturing the video of the symposium we recently co-sponsored and how the word came into use by the medical community long before there was an intersex advocacy movement and how the docs use it.
Martha asked about the symposium---it went very well. We had scholars from 3 continents and 6 countries. Overall, it was pretty incredible and I hope to have some video clips available for streaming on our site soon. I really need to write a report soon, but will busy this week talking with a couple of reporters who have contacted me since and working on the press release I referred to above.
Betsy
