The first works of academic bioethics I read were by notables such as Peter Singer, James Rachels, and Bonnie Steinbock, but that is not where my interest in bioethics actually began. In the 1980s, I ran across the book, Our Bodies, Ourselves, and I was immediately captivated by the book and the movement it represented, even if I wasn’t part of the particular movement.
The book began as an outgrowth of the feminist movement when 12 women met in 1969 to discuss their experiences with doctors. They began compiling and disseminating their stories and information to empower women to take charge of their own healthcare decisions. Bioethics as a professional field developed in the 1970s, but the authors of Our Bodies, Ourselves were ahead of professional bioethicists by a few years. In 1970, these authors released a booklet titled “Women and Their Bodies.” While professional bioethicists focused on the role of autonomy in healthcare, these women were creating autonomy by giving women information and the courage to take charge of their own healthcare. You can read more about the history here.
At the time these women met, abortion was illegal and most doctors were male. As the authors explained in the preface to the first edition of the book, “we wanted to do something about those doctors who were condescending, paternalistic, judgmental and noninformative.” To combat the attitudes they found common in doctors, they presented information on birth control, abortion, menstruation, masturbation, and sexuality in frank and shame-free language. As a outcome of the approach, they said, “Our image of ourselves is on a firmer base, we can be better friends and better lovers, better people, more self-confident, more autonomous, stronger and more whole.”
Our Bodies, Ourselves, the book, continues to be published (now in more than two-dozen languages), and the organization, Our Bodies Ourselves (OBOS), continues as a nonprofit organization promulgating information on girls’ and women’s health and sexuality. Their efforts now extend globally through the Our Bodies Ourselves Global Initiative (OBOGI).
These women approached bioethics from the ground up and changed the world.
This is how I feel bioethics should be conducted for the greatest impact. Patients, ideally, should drive the focus of bioethics and inform both ethicists and healthcare providers of what issues are important. The only way for this to happen is for patients to tell their stories of how they experienced healthcare, medicine, illness, and even death.
To that end, I am inviting patients to submit their own stories of illness and medicine to Ethics Beyond Compliance. If you would like to submit a story related to your experience of illness (either as a patient or as a caregiver) or grief, please send it to me. I will have a story coming up in the next few days, but I hope to make it a regular feature of the blog.
See also: O is for Our Bodies, Ourselves