on doing advocacy work
This page provides links to some of what I’ve written and done with regard to doing advocacy work. I don’t mean to imply this is the only stuff on activism worth consulting! It just provides some organization by topic to help my web visitors find material of interest.
My book, Galileo's Middle Finger: Heretics, Activists, and the Search for Justice in Science, is a first-person account of trying to do evidence-based activism in irrational fields. If you do activism, or want to do it, or hate activists as a class, please give it a read and tell me what you think.
Ever since early in my involvement with the Intersex Society of North America, I’ve been essentially doing activism and advocacy from an academic base. I’ve worked to change the social and medical treatment of children born with body types that are often treated with “normalizing” surgeries and medicines. (This has included children born with intersex, conjoinment, dwarfism, and so on.) Along the way, I’ve learned quite a bit about what works and what doesn’t.
My “top ten tips” for doing activism from an academic base are available at this site and at Bioethics Forum. At Bioethics Forum you can also read my criticism of the practice of many of my fellow bioethicists who come across a bioethical dilemma to only stare, think, speak, and move on. For some specific ideas about how to change medical practice, see Get Thee to a Hospital and Sleeping with the Enmity. For a bit on why I do activism, see My Identity/Politics. For why you have to be an educated activist, see Informed Dissent. For a history of activists run amok, click here. For what activism looks like when you turn local, see my account of trying to get our power company to save us from freezing, Try Everything.
If you're here because you're wondering what's with bioethicists who act like patient advocacy is from Mars and while they are from Venus, check out this essay on the SUPPORT controversy, and this follow-up.
Activism can work if it’s done well--that is, if it is done effectively and morally. (And if it isn’t done effectively and morally, it backfires.) Really, activism is not as scary as a lot of academics considering it think it will be. If you’d like to read about how I made activism an integral part of my academic career, see my autobiographical essay on being one of the leaders in the intersex rights movement. Or better yet, pick up a copy of Galileo's Middle Finger: Heretics, Activists, and the Search for Justice in Science.