Do Frequency Rates Matter?

Now that we finally have a regular staff of five at ISNA, we find ourselves in the happy position of regularly having interesting discussions about our work, our mission, and our cause. One such discussion arose recently around the question of how frequent intersex is.

We had put our Programming Assistant Colleen Kiernan on the task of updating the frequency chart on our FAQ. Colleen soon hit a evidentiary wall, and posted her frustration on our staff intranet, as shown below. Our Director of Public Relations Jane Goto then replied with many important insights. So we thought we would share this dialogue.

Should a person’s rights depend on the frequency of her or his condition? No! But does frequency matter to individuals’ experiences of group identity (thus leading to an end of shame and secrecy)? Yes! Read on.

Colleen wrote:
I have spent a few hours searching Medline to try to update the frequency charts and have found little-to-no new information. The majority of frequencies reported refer back to articles cited in Blackless et al.

I am more than willing to look into this further and spend more time on it, however it seems that no matter how much research I do, or anyone does for that matter, frequencies will remain underreported and inaccurate and, I would argue, unimportant.

I spoke with Alice Dreger, ISNA’s Director of Medical Education, about why frequencies were important to report. She explained some of the common concerns and questions that people have regarding frequency and explained that it can at times offer comfort to know that there are other people out there facing similar issues, and, while I understand this, I cannot seem to understand why statistics are necessary for this sort of comfort.

For the last three months I have been working with pediatric cancer [research and medical care], and each time I watch as parents are told their child has cancer and it’s really bad, one of the first questions they ask is about statistics. The best answer I have heard that involves statistics is as follows, “well, with XYZ diagnosis, the statistics say that your child had a 10% chance of survival, but keep in mind that, although there is a 90% chance your child won’t make it, it is still possible that you’re child will be in that 10%. It’s as simple as this: your child will either survive or not survive. What is important is that your child receives the best medical care and that you love your child regardless of his diagnosis. Numbers really don’t matter. What matters is that you take care of yourselves and your son and that we work to get through this without losing hope based upon numbers.”

Maybe it sounds like optimistic B.S., but when I think about it, for me, it does seem to make sense. It isn’t about the numbers; it’s about the people behind the numbers. So, yes, I am sure that intersex conditions are underreported and yes, I am sure that there are many reasons for this underreporting that I disagree with, but what seems important is that because of the work that ISNA and other activist and support groups provide, people who are born with intersex know that, regardless of statistics, they are not alone.

I knew that I loved ISNA when I heard Alice say, “Forget the nature vs. nurture debate, and start focusing on what is important: people born with intersex conditions are human beings who deserve to be treated with respect.”

And so now I say, whether it’s 1 out of 300 or 1 out of 30,000, it doesn’t really matter how big or small; what matters is that we recognize individuals as human beings deserving of recognition, support, and respect. Just because organizations/donors/governments tend to give money/recognition to larger numbers doesn’t mean that numbers should legitimize conditions or feelings.

People with intersex are not alone no matter how big or small the number, and that is the message that I think ISNA should send: that we don’t care about statistics, what we care about are people. Reactions?

Jane wrote back:

Dear Colleen:

This dialogue could be very powerful as a prologue to our updated frequency chart. I am not shouting here, although it might come across that way. I just want to share some visceral reactions to why I think frequency statistics are important.

Thanks for the work you’ve done so far on this and for sharing your perspective. Allow me to share my perspective as a woman with an intersex condition.

At the core of whether or not frequency stats are important is the difference between advocacy and peer support. Even though ISNA seeks systemic change through medical education reform and other means, ISNA does facilitate peer support by providing not only a gateway to other support groups but also by maintaining the definitive source for information on intersex by way of www.isna.org. This would have to include the best statistics and analysis/commentary on frequency available, in my opinion. “How often does this happen?” and “How many people like me are there?” are two very legitimate questions. Over and over and over again I hear from women with AIS and similar conditions such as Swyer, Turner, MGD, PGD, MRKH, 5ARDS, etc. that they have been told by physicians who should know better that “you will never meet another person like yourself as long as you live.”

I cannot stress strongly enough that Rarity Feeds Freakishness. The knowledge that 1 in 1500 people have an intersex condition is EMPOWERING.

One physician who serves on our Medical Advisory Board has been to every AIS conference in the US since 1996. She estimates that there are, conservatively, about 8000 women with AIS in the U.S. and Canada. Remember, that is just one intersex condition and a rather rare one compared to other conditions like Klinefelter Syndrome. The AISSG currently has a couple of hundred women on its mailing list and about 75 of those are in the adult e-mail circle. Statistics are important for a wide variety of reasons.

As a board member of the AISSG, the statistics tell me that there are legions of women out there TODAY with AIS. Stats also tell me: a) the vast majority of these women are so closeted and ashamed that they have not reached out for support: b) their doctors have been withholding the truth of their diagnosis from them; c) we are not doing a good enough job of outreach and making our support services known; d) that parents of newly diagnosed girls are not aware of the fact that there is an entire community out there to call upon for information and support.

Singer and AIS woman Eden Atwood wrote a piece for the AIS group several years ago about the life-altering experience of “finding her tribe.” Not to put too fine a point on it, but if you were the last of the Mohicans, wouldn’t it be a revelation to discover that there are 8000 Mohicans living in communities all over North America? Further, imagine how isolated, rare and freakish you might feel if you were a woman of color and also had an intersex condition.

As a point of interest, I met a woman with AIS last year who is in her seventies, is a legal advocate for children in the courts, has adopted many kids of her own, etc. She just found out two weeks before the conference where we met that her family doctor had been lying to her for decades about her diagnosis. Obviously, she was madder than a wet hen when she discovered the truth by accident by Googling some of her symptoms. This story is not unique by a long shot.

Imagine the horror of finding out your diagnosis on the internet or from scouring the stacks at the university medical library. Or, imagine squirming in your seat during a college genetics class and recognizing that your buccal smear or karyotype reveals that you have a different genetic sex than you thought you had. Would it offer some comfort or consolation to know that this actually is the case with thousands of people and that it is, afterall, a naturally occuring element of nature?

Jane