In a phrase, I do social justice work in medicine and science. I do that through my research, writing, speaking, and advocacy. I’m constitutionally inclined to use history to help create a more just present and future. I’ve built up enough of a reputation for being effective that people now often come to me to help “fix” problems of injustice in medicine and science. As a bit of a self-effacing joke, I’ve taken to wearing cowgirl boots. I do leave the spurs at home, unless I’m going to a surgery conference.
Much of my professional energies has gone to using history to improve the medical and social treatment of people born with norm-challenging bodies, including people with atypical sex (intersex and disorders of sex development), conjoinment, dwarfism, and cleft lip. The question that motivates many of my projects is this: Why not change minds instead of bodies? I also study and write about the politics of science, medicine, and anatomy, and sometimes I consciously try to change those politics. I work with medical professionals, patients, and scientists to try to help make medicine and science more evidence-based and more ethical. I would have to say I am a bitter optimist.
My big fancy title is Professor of Clinical Medical Humanities and Bioethics. I have a great job in the Medical Humanities and Bioethics Program at the Feinberg School of Medicine of Northwestern University in Chicago. There are rumors that my Northwestern business card reads “I’m not a doctor, but I sleep with one.” (Those rumors are true.)
My Ph.D. is in History and Philosophy of Science from Indiana University, and my work has been funded by many generous institutions, including the John Simon Guggenheim Memorial Foundation (Guggenheim Fellowship), the Woodrow Wilson Foundation (Charlotte Newcombe Fellowship), the Arcus Foundation, the California Endowment, the National Endowment for the Humanities, and the Social Sciences and Humanities Research Council of Canada. I work part-time at Northwestern to maximize my freedom to go crusading, which means that in reality, most of my funding comes from the doctor with whom I sleep. So I guess you could also say I’m a sex worker with one really great client. (How many johns know how to help you refine a PubMed search?)
As part of my advocacy and public education efforts, and because writing is my true love, I do a lot of mainstream writing and other work with the media. My editorials and essays on science and medicine have appeared in the New York Times, the Wall Street Journal, the Washington Post, the Chicago Tribune, and elsewhere. My essay “Lavish Dwarf Entertainment” was chosen for Norton’s Best Creative Non-Fiction. That article is about my friend Danny Black, who manages and does dwarf entertainment and who has also been my career coach for my work as a speaker. (Danny taught me how and why to add a zero.) I am also a regular columnist for the Hastings Center’s Bioethics Forum. I still can’t explain to Danny why I write for the Hastings Center for free; he thinks academics are really weird.
For about seven years I co-directed the Intersex Society of North America (ISNA), the leading policy and advocacy organization for people born with what used to be called “hermaphroditisms.” Nowadays I guest-advise about genital peculiarities for Dan Savage’s internationally-syndicated column, “Savage Love.” I also do pro bono, private historical work for people coping with traumatic medical histories. That’s probably the most meaningful work I’ve ever done, and it’s what I’d do 24/7 if I won Mega-Millions.
My three largest research projects have been covered in the New York Times (on intersex; conjoined twins; and the Bailey book controversy). A recent project on anthropology was covered in Science. I've also appeared on dozens of national and international television and radio programs, including the Oprah Winfrey Show, Good Morning America, CNN International, Discovery Health, HBO, and the BBC. (I have not always worn as much lipstick as my mother would like, even on the radio.) My books, including One of Us: Conjoined Twins and the Future of Normal and Hermaphrodites and the Medical Invention of Sex (both from Harvard University Press), have received positive reviews in the New Yorker, the New England Journal of Medicine, the London Review of Books, JAMA, Nature, and elsewhere.
Although I sometimes get labeled a "postmodernist" because I write and speak about the social complexities of science and medicine, in fact I would have to label myself a raving modernist. I really believe in the power of science to improve our knowledge and our lives. (I write non-fiction on purpose.)
For fun, I like to give advice about academic office interior design, to ice fish, to take my pet rat to the farmers’ market, and to cook...but not all at the same time. At the moment, I’m working on a book about scientific controversies over identity politics, on a major investigation into the off-label use of prenatal dexamethasone, and on the perfect blend of black and green tea. I’m also co-parenting a completely marvelous child who will someday answer the question of what happens when a kid is raised by Auntie Mame and Kermit the Frog. So far, so good.
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