A Conversation With Alice Dreger, Health and Sexuality Expert

Dreger_sized.jpg It's hard to put Alice Dreger in a box. Part historian, part columnist, part advocate, part educator and mother of one, Dreger works to improve social and medical treatment for people with norm-challenging bodies, including conjoined twins and intersexed individuals. Some know her as a writer who has commented on topics such as neonatal circumcision and dwarf entertainment; others know her as a professor of clinical medical humanities and bioethics at Northwestern University (or perhaps as the sassy teacher whose business card reads, "I'm not a doctor, but I sleep with one.")

One reason it's so hard to put Dreger in a box is because she aims to erase that box altogether. The author of Hermaphrodites and the Medical Invention of Sex as well as One of Us: Conjoined Twins and the Future of Normal, Dreger has spent her career asking people to consider an important question: Why not change minds instead of bodies? Here, Dreger discusses the difference between "normal" and healthy, the problem with cosmetic medicine, and why we should learn to appreciate ambiguity.

What do you say when people ask you, "What do you do?"

I'm always stumped. Recently at the ER (where they stitched up my cut finger) I claimed to study the history of 19th century medicine, because that always elicits great ER horror stories about pre-modern wounds and treatments. I do work half time as a historian of medicine at Northwestern University's Feinberg School of Medicine, and I started my career with work in the 19th century. But these days I mostly help out living people. I gave up tenure and much of my income six years ago so I'd have enough time to do what felt important. My doctor-husband pays most of the bills (yes, I trade sex for money), and I drive a 1995 Saturn SL. It's a good life.

What new idea or innovation is having the most significant impact on medicine?

Doctors are starting to really measure what matters to patients. Instead of just looking at whether your bone density or cholesterol number is up or down, they are asking, "Are you more likely to get a fracture?" or "Are you more likely to die?" This means that in cases of sex anomalies, they're finally paying less attention to how good a surgically constructed vagina looks to the surgeon, and paying more attention to whether the girl ends up feeling good about her body.

What's something that most people just don't understand about your field?

Doctors are human animals. They want to be loved, they are tribal, they instinctually favor stories over scientific evidence, they make mistakes, and even small gifts make them susceptible to being biased. If we took doctors seriously as human animals, we might hurt them—and they might hurt us—a lot less.

What's an emerging trend that you think will shake up the health world?

Sorting out the difference between normal and healthy. What we should care about is health—reduction of morbidity and mortality. Too often we instead pay attention to whether something is "normal." A hospital may spend several million dollars separating a pair of conjoined twins even though that separation is likely to leave them worse off. The problem is that going for normal is often more profitable for the "providers" in the short-term than going for healthy is.

What's a health trend that you wish would go away?

"Cosmetic medicine," which I take to be an oxymoron. Using medicine in the service of cosmesis is generally bad for patients, bad for doctors, and bad for democracy. The only exceptions are when we know the intervention will actually reduce suffering, as with a primary cleft lip repair.

What's an idea you became fascinated with but that ended up taking you off track?

Since I don't live on a track, that's a tough one. I would say I've spent 10 times longer than expected on my current project: trying to defend the rights of hundreds of pregnant women who apparently have been given an off-label drug designed to reshape their fetuses without being truly informed that its use is experimental and risky. This is the use of prenatal dexamethasone on women "at risk" for having a girl born with ambiguous genitalia. My colleagues and I are making progress on this project, but I sure expected the government to care more and do more when I started down this road.

Who are three people in the fields of medicine or bioethics that you'd put in a Hall of Fame?

Frances Oldham Kelsey of the U.S. Food and Drug Administration (FDA) for asking what was actually known (and unknown) about thalidomide, for stopping the travesty, and for setting an example for the FDA to follow. Elizabeth Loftus of the University of California for figuring out what really happened in the index case of supposed "recovered memories" of childhood sexual abuse and for bravely challenging that legal-psychological-industrial complex. And Carl Elliott of the University of Minnesota for trying to hold his own university to the most basic standards of medical ethics in industry-funded drug trials. (Loftus and Elliott show why tenure is worth its costs.)

What other field or occupation did you consider going into?

After I dropped out of college at the age of 19, I became a mortgage broker, and when I went back to school I thought about going into real estate law. I probably would have made a lot more money and died of boredom by now.

What website or app most helps you do your job on a daily basis?

Call me a geek: PubMed, the government index of medical journal articles. That's where I go to figure out what we know and don't know about whatever condition I'm interested in. The National Library of Medicine truly is the division of our government that makes my social justice work possible. (Wish I could say the same for the Office of Human Research Protections.)

What song's been stuck in your head lately?

Ingrid Michaelson's "So Long." I think my subconscious is singing it to the book manuscript I'm finishing, a first person (stressful) exploration of scientific controversies in the Internet age. ("You've made me into someone who should not hold a loaded gun.") The book is kind of a memoir of other people's lives, and I think I'm going to miss working on it, but it needs to go. Still, I'm nervous about having to live up to being that book's narrator. I keep reassuring myself I can always return to the dead.

Image: Courtesy of Alice Dreger