by Rachel Levit Ades, blogger, Disability Write Now
The recent rape and pregnancy of a woman at the Phoenix Hacienda HealthCare facility has made national and international news.
During the first weeks of reporting on the case, news outlets described the woman as being in a “vegetative state.” That turned out to be incorrect, as some news outlets have subsequently reported. The woman doesn’t seem to meet the medical definition of PVS, or being in a Persistent Vegetative State. The New England Journal of Medicine classifies PVS as “a clinical condition of complete unawareness of the self and the environment,” yet the woman at the care center reportedly responds to some stimulation, such as touch, sound, and being around family, according to the family.
However, one of the issues with term “vegetative” is that it may not even always refer to PVS. Sarah Ruf of the Arizona Developmental Disabilities Planning Council says that “vegetative” and “vegetative state” are often misused or used indiscriminately, not just by the media but in social contexts.
The term has been used colloquially since at least the 1920s. Authors George Bernard Shaw and Aldous Huxley, for example, used it in their writings to describe someone who lacks intellect and doesn’t derive much meaning from life.
The term “vegetative state” was first introduced in a 1972 medical journal, in an article aptly titled: Persistent Vegetative State after Brain Damage: A Syndrome in Search of a Name.” The authors thought it was a useful way to describe growth and development with the absence of sensation. The language remains in medical usage, though in 2010 the European Task Force on Disorders of Consciousness proposed using the term “unresponsive wakefulness syndrome”, or UW, to describe patients who might otherwise be classified as PVS.
The term “vegetative” outside of the medical context has often been applied to people with and without PVS or other medical conditions. Calling someone a “veg” or “vegetable” is demeaning, especially to those who live with developmental disabilities. Because of this, The Associated Press Stylebook, which most journalists follow, advises journalists to avoid using these terms, while also saying that “vegetative state” is acceptable. This “people first” approach also was endorsed in a popular disability style guide produced by the National Center on Disability and Journalism, based at Arizona State University.
However, coverage of the Hacienda Healthcare case has prompted the NCDJ to re-evaluate its recommendation. The style guide has been updated to recommend using “comatose” or “non-responsive” as more acceptable alternatives to “vegetative state.”
Phoenix journalist Amy Silverman, a member of the NCDJ board of directors at ASU, believes the choice of words made a big difference in the Hacienda Healthcare story. “For so long, we knew so little about this woman, and I believe it really affected both the coverage of her story and the response people had to it,” she said.
The story about the Phoenix patient, while horrifying in its details, hopefully has caused us to be more aware of and sensitive to the vulnerability of those who are classified, accurately and inaccurately, as “vegetative.” Focusing on getting the full story and finding neutral terms to refer to those who are comatose is a small but necessary step in ensuring these individuals are treated with respect.