Woodrow Wilson News & Publications
WW NEWSLETTER EXTRA: Fall 2011
Alice Dreger CN '94: At the Intersections
Dr. Dreger during her recent TEDTalk: Is anatomy destiny?
Alice Dreger CN '94 works at intersections—the intersection of medicine and ethics, of research and activism, of traditional academic work and publications for the general public. And she works with people whose anatomy falls between classical categories, and who find themselves carving out identities in those intersections.
"I wear two hats in most of what I do," Dr. Dreger explains. "Under one hat, I do history of anatomy. I'm a historian by training, and what I study in that case is the way that people have dealt with anatomy…The other hat that I've worn in my work is as an activist, as a patient advocate—or, as I sometimes say, as an impatient advocate…. In that case, I've worked with people who have body types that challenge social norms."
While her work encompasses the experience of individuals with a range of birth anomalies—conjoined twinning and dwarfism, for example—she is particularly known for her work with those who are intersex. As defined by the Intersex Society of North America, intersex is "a general term used for a variety of conditions in which a person is born with a reproductive or sexual anatomy that doesn't seem to fit the typical definitions of female or male."
Now professor of clinical medical humanities and bioethics in Northwestern University's Feinberg School of Medicine, Dr. Dreger first became interested in intersex and other birth anomalies when her dissertation advisor suggested she look into hermaphrodites and the history of medicine. The connection between the two was not immediately apparent to Dr. Dreger, and she was surprised by what she found. "I looked at the Index-Catalogue of the Library of the Surgeon-General and there were 400 cases. And I thought 'How is it I've never heard of this?'" she recalls. "I became really interested simply because of the fact that I had never heard of it and yet here, even in the 19th century, was this huge wealth of literature." The dissertation became Dr. Dreger's first book, Hermaphrodites and the Medical Invention of Sex (Harvard University Press, 1998), which examines how doctors and scientists treated intersex people in the late 19th and early 20th centuries and how they are treated in present-day medicine.
Reading case studies, getting to know people with various birth anomalies, and hearing about their medical histories led Dr. Dreger to a more active interest. "I became fascinated and wanted to figure out if there were other realms of medicine where people behaved in this very strange fashion—where they lie to patients and do surgeries on children purely for cosmetic reasons without evidence that it helps. I started looking at case studies and, inevitably, running into people who had these birth anomalies or whose children had them. Getting to know those people, I became fascinated with the current system, and became an advocate for that population in trying to change it."
Historical research and contemporary activism, Dr. Dreger says, "come together on issues of evidence. I'm a more subtle advocate than I think many people are because I'm not actually in it for the identity claim. I want to know what's going to help and what's going to hurt. So I look at the evidence—and sometimes the evidence goes against what activists say or want, and I have to disagree with them. Being trained in the history and philosophy of science, I'm still, at the end of the day, a big old science geek, and I really want to know: What does the evidence show?"
To change the system takes a combination of mass education and personal relationships, she explains. "It took me a lot of time to learn that social change actually happens through personal relationships," Dr. Dreger says. "Some social change has to be tackled from the other end—which is to change conventional wisdom—and that I do through the media. But you have to do that one-two punch to actually get the change to happen. When you tackle both ends, personal relationships and public perception, you begin to get this feedback loop: The experts are hearing conventional wisdom change and they literally say to me, 'Well, the culture's changed enough that we can move in the direction you're suggesting,' and then the culture says, 'Well, the doctor says that's where we should be going, to change this, so it must be true.' And nobody seems to realize you're puppeting the whole thing from behind. It's doing those two things together, I think, that is finally effective."
Dr. Dreger's commitment to mass education has made her a significant presence in the media and online. Mainstream media outlets and programs often consult her as an expert on intersex; she also maintains a personal website and blog, as well as a blog on Psychology Today ("Fetishes I Don't Get"), and frequently posts on the Hastings Center's Bioethics Forum. "At my core I'm really a writer," she says. "I always wanted to write in mainstream venues, but it's also clear that the Web is a place where you can directly access people's minds and work for change. And being in a 24-hour news cycle, if I want to piggyback on some international story and twist the conversation in a direction that might produce some progress towards people opening their minds, the Web is a way to do that."
She cites Caster Semenya, a South African runner whose sex was called into question by sports officials, as an example. "I dropped everything and made sure that I used that for a moment of international sex education," says Dr. Dreger. "For the first time, the whole world was ready to talk about sex anomalies, and I thought: here's a perfect moment to educate, educate, educate. I put a media advisory up on my own website that went through the same questions reporters were asking me. I just wanted to get some of them not to say 'she has two sets of genitals,' not to say 'you're a man if you have a Y chromosome.' I was stunned when somebody wrote to me and said, 'I read your quote in USA Today,' and I thought 'I didn't talk to USA Today this week.' It was a quote from the media advisory. And so a few million people got the story a little closer to right."
Getting the story or the reform right is not a simple issue. Recently, the Australian government announced that passport applications would now include a third sex category: "X." While the move might seem to be a step in the right direction, Dr. Dreger explains why "X" is not an option. "The truth is that there aren't three sex categories in nature—male, female, and intersex. In nature, sex blends in complicated ways from one variation to another. The idea that there is a third category legitimizes the other two categories as if they are natural, when in fact the truth is that nature doesn't draw these lines; we draw the lines on nature. I admire Australia for moving forward, but I think they're still stumbling a bit on the details." (Read Dr. Dreger's blog post on the topic at Psychology Today.)
As much as Dr. Dreger is in the public eye, "there's a lot of stuff that people never see that I do," she says, such as consultancy work with doctors and scientists and helping individuals with birth anomalies that reach out to her. "Every day I get emails from people seeking help with some issue. Sometimes I can just send them to other websites and groups. But a few times a year I'll run into somebody who really needs personal service, for whom it's not enough to say 'you need to join this support group'—someone who really needs to figure out what it says in their medical charts from the 1960s and 1970s. They have a Xerox copy of a Xerox copy and the handwriting's unclear and the terms are unfamiliar. I'll sit down with them and say, 'Let's figure this out.' And I'll call a bunch of docs and they'll help me out." She has written about helping individuals discover surgeries done at birth to address their intersex, and—in one particularly poignant essay—about helping a mother find information on the stillborn conjoined twins taken from her years before.
It's this "history work" that Dr. Dreger would love to do full time. "If someone handed me a million dollars and said, 'Do whatever you want with it,' I would set up a group of pro bono, client-centered historians who would help people who've been through traumatic events by simply doing narratives. The psychological literature is very powerful on this: creating narratives around traumatic events helps people heal. There would be a historian stationed within the hospital, there purely for the purpose of taking a history—not a medical history but a history of the trauma. That person could give the patient a purely descriptive written document that says, 'This is what you've been through,' and provides historical context: 'This is what was happening in the 1960s when you were being treated. This is what was happening in your nation at the time.' And they would draw on all the historical wisdom and provide people context of their lives and give them that solace. That is really at this point in my life what I'd love to be doing. It's so satisfying. The way people say 'thank you' when I write their four-page history is like no other 'thank you' in the world."
Dr. Dreger is currently finishing her next book—"a memoir of other people's lives" tentatively titled Galileo's Middle Finger: Science and Identity Politics in the Internet Age. "It's a first-person account of having worked inside, and having investigated the history, of scientific controversies. It's an attempt to examine where we are now in the world in terms of how scientists and doctors interact with activists. Since I've been on both sides and have been sympathetic to both camps and helped both camps, I feel well-positioned to care about them both and to try to come up with solutions to the way that we deal with issues of human identity. A lot of the book is about trying to live the life of a historian but still remain very much engaged with our changing world."