Bioethics as a field lives always in the haunting past of medicine, in the querulous present, and in the troubling and intriguing future, thinking always of implications, always of causality. This article is aimed toward a different task--about what remains to be done, what might await us, and about the relationship between the hard work of justice, and the daily social practice of our field of Bioethics and the Humanities.
Let me begin in a personal and political narrative, noting that good feminist scholarship is based in the convergence of these two things, as well as in sources textually rooted in a shared scriptural tradition, and in philosophical scholarship rooted in reasoning from both shared and contended texts. I will then suggest that the difficult choices such narratives insist we confront face us both as a collection of individual bioethicists and humanists, scholars and practitioners, and as a national organization of bioethics and humanities. Finally, I will argue that the centrally hard choice we must face--how to confront the terrible problem of justice in health care--will need a theory of confrontation and encounter that we have yet to build.
Here is the first story: In 1969, I left my elite East Coast college to try to change health care, or rather the lives of the women who delivered health care, and to organize a union in the unorganized hospitals of Philadelphia. Like bioethics, it was an enterprise of the 1960s, driven by ideas about the individual, rights, and the state. I signed up in a prototype of a "welfare to work" program at James Martin Vocational Trade School, which was a grim, decaying, Dickensian brick building at the very edge of the city, where the tracks ran out just before the wharves. It was a year-long program, in which we were to be trained as licensed practical nurses. But my grandiose plans about organizing the masses fell apart quickly--instead, I got organized, I had to listen and learn the ropes. It was far more than the confrontation with the radical truth of the wounded body that every clinician has to learn, the blood on your hands, the feeling of death filling the small chest as you listened, the shaken shoulders of the father who has lost his baby son; it was learning about the wounded body lost in a health care system, when you would be inhabiting nearly the same floor of the beautiful palace of medicine, the practical nurse nearly as powerless in the face of medicine as the patient. The women who trained with me all knew the lessons of silence, oppression, and resistance, how to make meaning and order of the chaotic bottom of the hierarchy. LPNs were paid so little that our first demand in the union was "$100 a week," so little that they taught me to buy shoes in the South Philly street market, looking for discards that made a pair, and how you could use Vaseline to pretty them up, good as new. They told me the most important thing to do was to listen to the patient when she talked. The work was hard, without sentiment; the premise was that one's responsibility toward the charity hospital patients was absolute. You care, they told me, for everybody like she was your momma. You care for everyone the same.
It is a world that is largely unspoken in our texts of ethics--which is why I wanted to mention it here. (1) This world, and the concerns and venues, the union hall, the struggle about striking or not, about the ethics of workload, about what is lost when we no longer staff the unit so that one can help with a bath, or feed the old man carefully, is rarely the subject of our work. We tend to think about bioethics, even health care justice and access, as a problem of the highest tech medicine, the access to the scarcest commodity, rather than the access to what we could have much of: human touch, conversation, responsibility for attention, a relationship of simple, practical nursing.
Here is the second story. Ethics seeks to be prophetic; Dena Sieden has noted that this must be the first task of clinical ethics, and we normatively argue from the stance of Jeremiah, or Isaiah--calling against the falsity of piety, or the power of profits, or the coercion of oppressive states. …