In anticipation of the Graphic Mundi updated reprinting of Taking Turns: Stories from HIV/AIDS Care Unit 371 in November, I am sharing parts of the book’s backstory. In this post, I’d like to discuss how I navigated the ethical complexities of being a nurse and creating a graphic memoir about a very specific place. Students using my books in their classes frequently ask about this, so I thought I’d write about my decision making process here.
To detail how I treated my patients when they appeared in the book, I’m excerpting below from the piece I wrote for the Graphic Medicine edition of the American Medical Association’s Journal of Ethics. My contribution to the issue was titled, “Representing AIDS in Comics” and the final paragraphs describe my struggle:
Despite all of the guidance I gleaned from comics focused on HIV/AIDS, I needed to resolve one area of ethical consideration specific to my book. As a nurse, I am bound by and committed to the confidentiality restraints of the Health Insurance Portability and Accountability Act (HIPAA), which protects individually identifiable health information held by covered entities, such as health care providers. And while I did not want to tell, or presume to tell, my patients’ stories as they are not mine to tell, I did need to touch on those stories in order to relate my experiences as a nurse on Unit 371. However, with the exception of one narrator/character in the book (“Roger”), my patients could neither be interviewed nor consent to their inclusion in the book because they no longer were alive. Despite changing names and avoiding other identifying features, I remained concerned that I might unwittingly reveal a patient’s identity as I related the history of a specific unit in a specific hospital. Comics, of course, add a visual dimension, which can potentially increase the possibility of inadvertent identification if the avatar representing a patient too closely resembles an actual patient.
A main storyline in my book follows a character I called “Tim.” In life, “Tim” had been involved in the arts, but not as a painter as I portray him. He and I had become friends, and he expressed an interest in collaborating with me on artistic projects. He consented to being photographed for a colleague’s art project about AIDS care and expressed that he enjoyed this participation. By changing his name and his artistic medium that he had so loved in my book, I felt almost as though I were dishonoring “Tim’s” memory or that he might think so were he alive. Needless to say, this notion bothered me a lot.
After much struggle, I resolved the issue with a compromise that worked for me. As I did with the two other featured characters in my book, “Stephen” and “Jane,” I created “Tim” as a composite character, combining my patient and friend’s story with another actual patient’s creative endeavors, another’s illness trajectory, another’s back story, another’s appearance, and yet another’s circumstances of death. This approach not only resolved my concern about inadvertently disclosing patient identities but also allowed me to remember and honor many more of my patients while not dishonoring, I hope, the memory of any one of them.
As far as the non-patient characters in the book (with the noted exception of Roger) they arise from the oral histories. I interviewed twenty-five people, but only twelve of them appear in the book. Each of my narrators was able to approve of (and edit) my work at three stages: the exact transcript of their interview, then the paragraphs I created from the interviews that appeared in my thesis (see last post for details on how I created those) and then finally the section of the book in which they appeared as comic ‘characters.’ This kind of constant checking back in with my narrators was one way I attended to the ethics of representation in Taking Turns.