This is the theme that pervades all of my work: evidence is an ethical issue. In practice, I do social justice work in medicine and science, and I do that through my research, writing, speaking, and advocacy. I’m constitutionally inclined to use evidence (especially historical and scientific evidence) to help create a more just present and future. I also spend a lot of my energy pushing specific groups of people to be more evidence-based, particularly within controversies. I’ve built up enough of a reputation for being effective that people now often come to me to help “fix” problems in medicine and science.
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 explicitly motivated the first fifteen years of my work is this: Why not change minds instead of bodies? (In 2011, the Utne Reader named me a “visionary” for this work, following my TED lecture on the subject.)
Lately I’m working on (and from) a more global thesis: The practice of evidence is the practice of ethics. This thesis grows out of my work on bodies but also my work on the politics of science, medicine, and anatomy. I regularly work with medical professionals, patients, and scientists to try to help make medicine and science more evidence-based and more ethical. In this work, I would describe myself as 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 would be 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. By choice, I work only half-time at Northwestern to maximize my freedom to go crusading, which means that in reality, about half of my funding comes from the doctor with whom I sleep. So I guess you could also say I’m a half-time 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. I write articles for the online health section of The Atlantic and have a featured blog at Psychology Today. 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 2009 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.
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, besides helping various support groups for people born with sex anomalies, I sometimes 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: I’d start an organization of historians who would do private, pro-bono, client-centered histories for victims of trauma.
Three of my large research projects have been covered in the New York Times (on intersex; conjoined twins; and the Bailey book controversy). My two most recent major projects have been covered in Slate and Science. I’ve been interviewed about my work by The Atlantic Monthly, and I've 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.) I’ve even had my work bashed by Rush Limbaugh.
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.)
In my personal life, I am 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.) 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.
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