Alice Dreger played intersex people a nasty trick for Halloween

By Cynthya/BrianKate

On Halloween day 2007 Alice Dreger played a nasty trick on intersex people and our supporters.  She pulled a bait-and-switch by turning a medical ethics talk on non-intersex medical issues into a platform to push her DSD agenda of trying to replace intersex with “Disorders of Sex Development” and pathologize and disrespect intersex people.  I know this because I attended as an out intersex person and Dreger publicly dismissed and disrespected me in front of a room of medical professionals.

Dreger’s scheduled talk at University of Michigan medical campus’ Bioethics Grand Rounds was titled “Should we attenuate the growth of children with disabilities?: Looking at Ashley in a broader context.”

That such a question is even being asked in bioethics creeps me out.  As an intersex person, as a person with a visual disability and as someone who’s had to endure “normalizing surgery” because a doctor didn’t want me having more than ten toes, and as someone with intersex friends and their families having been genitally mutilated, I can only see such a question being asked as a serious possible path for doctors to “help” disabled people as nothing but eugenics and all the horrible and sensational associations the word conjures.

For those not familiar with Ashley X, this was a case where a child born with a rare brain development condition called static encephalopathy, where her brain stopped growing, and doctors and family members decided to remove her uterus and breasts and pump her full of hormones to limit her growth.  This case is not about an intersex child, and Dreger was not brought to that campus to speak on intersex.

Dreger was introduced as having done “research and advocacy” on “issues relating to sex anomalies and disorders of sex development.”    So the people involved in bringing Dreger insist on calling intersex by the pathologizing label DSD.

Dreger was introduced as having been not just one of the more powerful members of ISNA (Intersex Society North America) but as having been a board member of the “Consortium on DSD Research.”  Even after hearing about the DSD Consortium from OII and Curtis Hinkle, I still couldn’t believe it because it just sounded too much like some kind of “X-Files” conspiracy.  Well, the truth is certainly out there, and the U of M bioethics staff were openly introducing Dreger as being a key player at some point in the Consortium.

After thanking U of M and such, Dreger began to talk … but not about the case she was supposed to. This is the bait-and-switch I refer to.  She derailed her own talk for roughly 14 minutes to push DSD.

She said a brief bit about why she was here to speak about Ashley, because of her background in the field of bioethics, and said something about her work on behalf of “people with Disorders of sex Development.”

She then launched into a PowerPoint presentation slideshow.  The first piece of this was the DSD Consortium’s Handbook for Parents, which she introduced as “these are several people with DSDs, including ISNA founder Cheryl Chase.”  I have yet to hear anything from Chase as to her stance on DSD, or what she thinks of her name and face being used to make people think that DSD was introduced with the participation of the intersex community when it was not.

She then brought up a slide of a pumpkin her son brought home to make a Jack O’Lantern, with a phallic/vaginal feature growing out of the top, and mentioned her husband, also in the medical field, joking about “they can take care of that these days.”

She then talked about how many boys with hypospadias have had to endure unwanted genital surgery to “correct” this because doctors’ arguments of “he might grow up gay.”  and “he won’t be able to write his name in the snow.”  Everybody in the room but me laughed.  My best friend’s nephew was put through such a surgery for just those reasons, so I hugged myself and shivered while the doctors laughed and Dreger stood there saying nothing to stop them.

Only after the room fell silent and at least 15 minutes into the talk that Dreger then brought the talk back to the Ashley case.  She at least did a more balanced job of talking about this case than about intersex, mentioning viewpoints of the family, disability activists/advocates and scholars/lawyers/doctors, and pointed out flaws on both sides.  If only intersex issues had been dealt with in anywhere near such a fashion, or not been brought up at all, or had an actual intersex person been brought to speak in equal time.

I almost didn’t get to participate in the Q and A because Dreger wouldn’t even look at me, let alone pick me, until the very end.  I showed up at this event in my Hermaphrodites With Attitude shirt, which I wore to show there was at least one actual intersex person at this event, with the intention of calling Dreger on DSD if need be.  I had my hand up through the entire Q and A.  Finally, Dreger could hold me off no longer without being seen as rude (and I would have jumped up to speak my piece before letting the opportunity fade anyway).

I did not expect to be heard out by Dreger, so I addressed the whole room behind me instead.  I said from the get-go that I had to comment both on her talk about the Ashley case and on another issues raised by the talk.  I said first that parents of children like Ashley should be put in touch with other parents if their child can’t communicate their needs and desires so it isn’t just doctors, scholars, lawyer and medical ethics boards who have the input in such cases.  Then I laid into the intersex (or rather DSD) portion of Dreger’s presentation.  I said that I had to comment on the whole “DSD” issue.  I said what I could given I had under three minutes.

First, that I didn’t laugh over the “write his name in the snow” bit about children with hypospadias but rather cringed because that is precisely what has happened to my best friend’s nephew, for precisely those reasons, at a year or two old, and that this didn’t happen in “the “dark ages” years ago” but within the past year or two.

I said that I had to comment on referring to intersex people as DSD.    I said that it is not a term created from within the intersex community but is one created from without by non-intersex doctors/lawyers/scholars.  I pointed out that DSD has disorder in the name itself and is disempowering and pathologizing.  I made sure to tell everyone that I am intersex, and have been out as intersex for nearly eight years now.  I spoke of how (whether or not it was their intent) some people are trying to use DSD to replace intersex as an identity over the objections of many intersex people like myself and that DSD is being used to erase the experiences and stories of non-lexicalized and particularly transgender-identified intersex people like myself, and mentioned that like myself, many intersex people do not necessarily identify as men or women.  I told the room that I did not consider the fact that I’ve had two puberties a disorder, that it may be different from a lot of peoples’ experience and certainly diverse, but not a disorder.

Dreger then dismissed me out of hand rather than respond to anything I said.  She gave me a cold look and said “Yes, I understand that language is an issue in this issue as in all issues.  But intersex and DSD are not what this talk was about, so we should bring the conversation back to where it should be.”

If intersex and the whole DSD mess weren’t within the focus of Dreger’s talk, then why did she derail her own talk to bring it up?!  She then said something like “and the reason why intersex people haven’t been able to buy into the DSD language is because many of the people don’t identify as intersex.”  That’s just like the people who go around saying “most intersex people are straight people who identify as men or women with a birth defect and aren’t activists.”  That dismisses and erases those of us who are LGB/queer, who don’t identify as men or women, who are somehow transgender and who are activists.  Dreger was being patronizing and talking down to intersex people and supporters that she knows our issues better than we do.  She is not intersex.  She is not transgender.  She is not lesbian or bisexual.  And yet she is claiming to speak for intersex people and many academics and doctors listen to her and not to people like myself, as the end of this story shows.

Dreger then gave some kind of closing remark, hob-nobbed with a couple of well-placed people, and swept out of the room with many of the doctors following her.  I stayed there and confronted the person in charge of the speakers’ series..

I told her I felt hurt, offended and dismissed and invisible-ized by Dreger’s response, and that I wanted to have some equal time provided to what Dreger said about intersex people. 

I was told that the Bio-Ethics Grand Rounds really only brings speakers who have medical credentials and are in bioethics.  I suggested every non-DSD intersex activist I could and even volunteered my services, pointing out that a degree is less important than actually including the voice of intersex people.  I told her that for many of us our experience in medicine is that of being pathologized and mutilated, that for many of us our “medical credentials” are the scars doctors left in our bodies.

She pointed out that Dreger wasn’t brought to speak on intersex, I pointed out that the talk had become about intersex by bringing Dreger in the first place, let alone by Dreger’s detour into DSD.  I left the room in rage, feeling silenced and victimized.  I thank Curtis Hinkle and the Organisation Intersex International for being friends and an alternative to this kind of system, and for giving me a place to talk about this.