public safety

“Vegetative”: A Syndrome Still in Search of a New Name

by Rachel Levit Ades, Blogger Disability Writ Now
2/14/2019

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.

Author, Rachel Levit Ades sits at a table in front of
Rachel Levit Ades, Blogger Disability Writ Now,
Rachel Levit Ades is a PhD student in Philosophy at Arizona State University. She studies applied ethics and philosophy of disability and is passionate about disability advocacy and inclusion.

 

Arizona Developmental Disabilities Planning Council releases report on sexual abuse of Arizonans with disabilities

 

2019 ADDPC recommendations on preventing abuse
Cover page of the report produced by the Arizona Developmental Disabilities Planning Council.

The Arizona Developmental Disabilities Planning Council (ADDPC) has released a special report with recommendations for the Arizona State Legislature and Arizona state agencies to prevent sexual abuse of Arizonans with developmental disabilities.

While the recent crisis at Hacienda HealthCare continues to draw attention to problems within Arizona’s current system of monitoring and reporting sexual abuse of people with disabilities, almost no formal policies designed to recognize and prevent such abuse exist. The Council’s report is called “Sexual Abuse of Arizonans with Developmental and Other Disabilities” and it contains specific actions that state agencies and care providers can take to prevent the sexual abuse of vulnerable adults.

Read the ADDPC report: Sexual Abuse of Arizonans with Developmental and Other Disabilities

 

For Filipinos with disabilities, climate change and natural disasters are a dangerous mix

For almost three decades, Bacita De La Rosa has been unable to walk due to a spinal cord injury she suffered after she was struck by a vehicle. She has since been dependent upon her family for help with many basic needs and cannot leave her home without assistance — all of which has proven to be very difficult when the inevitable tropical storm comes. Credit: Jason Strother/PRI

PRI’s Jason Strother examines how Typhoon Haiyan impacted the disability community in the Philippine city of Tacloban
Read his story on climate change, natural disaster and disability here

Labeling mass shooters as “sickos” perpetuates mental health stigmas

The National Alliance on Mental Illness (NAMI) released a statement condemning the imprecise language recently used by public figures to discuss the connection between mental health and mass shootings. President Trump and Dana Loesch, a spokesperson for the National Rifle Association, used words including “sicko,” “nuts” and “crazy person” to describe the diagnoses of mass shooter Nikolas Cruz. The NAMI statement criticizes such comments as reinforcing “inaccurate and negative stereotypes” that “create barriers to having real conversations about how to improve the mental health services that lead to recovery and participation in American society by people experiencing mental health conditions.” CNN.com interviewed several mental health experts who also suggested that mental illness is not a reliable condition for predicting violent behavior. Click here to read NAMI’s statement and click here to read CNN’s article.

Power outages in Florida led to 8 deaths at same nursing home

Officials in Hollywood, Florida have opened multiple criminal investigations into the deaths of 8 nursing home residents who died Wednesday morning from heat exhaustion during an ongoing power outage caused by Hurricane Irma. The New York Times is reporting that “More than three million customers in Florida still lacked power Wednesday, including roughly 160 nursing homes, according to the state’s tracking system.” Hollywood local paper The Sun-Sentinel is reporting 115 other senior residents at the home were evacuated from the overheated facility, but their relatives remain confused about their health status.

Mental health therapists helping Harvey survivors cope with ongoing psychological trauma

Anticipating, escaping and recovering from a natural disaster takes a heavy psychological toll on survivors. As they rebuild their lives economically they frequently need emotional support from their community. This article by Tony Plohetski, Andrea Ball and Melissa B. Taboada in the Austin American-Statesman (and reprinted in Chicago Tribune) describes how Texas social workers and psychologists are treating patients with psychological trauma after the storm.  

Coverage on the Attack of a Disabled Man in Chicago

The attack and kidnapping of a man with mental disabilities in Chicago—the act streamed over Facebook Live—has spurred a host of new media reports on violence and disability over the past week.

Here’s some of the reporting:

Fantasy Conventions Present Little Accessibility for Those With Disabilities

Professionals in the fantasy convention world are signing a pledge to refrain from attending the events until accessibility is taken more seriously by organizers. In an article from io9, some panelists at these conventions recount experiences where stages did not have ramps for those using wheelchairs. Read more