Students in my Writing and Medicine course are reading Rebecca Skloot’s phenomenal book The Immortal Life of Henrietta Lacks about an African American woman who unknowingly donated her cells to science following a biopsy for cervical cancer at Johns Hopkins in 1951. As a patient in the “colored ward,” Henrietta was at the time considered fortunate to be allowed in the facility at all and certainly lacked the privilege (documented or otherwise) of knowing that the additional cells were taken and then used for the advancement of science. But Henrietta’s cells weren’t just any cells. They reproduced at an astonishing rate, and HeLa (the official name given to the culture and its descendants) became some of the most influential cells in modern medicine.
As we delved into a complex discussion of biomedicine, humanity, the rights of an individual patient and her cells and the ethical demands on medical researchers, I found myself thinking about Edwina, Lisa, Roderick, Erwin and others who struggle with bodies affected by cancer at the same time they struggle against homelessness, hunger and all-around hopelessness. While to my knowledge, my friends’ cells aren’t part of any current research studies, many of the settings in which Henrietta found herself resemble the stories one or more of my friends have shared with me.
There’s the absence of information about a procedure they’ve undergone, or the absence of language and explanations they understand before signing a consent form. There’s the occasional lack of personal acknowledgement of them as patients–or perhaps more significantly, as human beings–when a doctor enters an examination room. There’s the dismissal of pain, in Edwina’s medical charts noted as “patient exhibits moderate discomfort” during ER visits when I happen to know she was in serious pain. There’s the consistent plot of parents, siblings and neighbors receiving a one-way trip to the doctor or hospital, never “goin’ if there wasn’t nothin wrong” as Edwina puts it. There’s the putting off of physical problems because there’s neither the time nor the money to do anything about it.
While the modern health care facility would never designate a “colored ward,” the truth is that the disenfranchised still enter and leave the medical system through the back door.