media

“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.

 

NCDJ Disability Language Style Guide featured on SPJ website

SPJ website features NCDJ disability language style guide
The Society of Professional Journalists recently highlighted the NCDJ style guide on its website.

Earlier this week the Society of Professional Journalists (SPJ) featured our disability language style guide on its Journalist’s Toolbox website, which highlights digital resources to help journalists in their reporting. As the SPJ site points out, a Spanish-language version of the NCDJ style guide is now available on NCDJ.org. Journalists can access the guide in both languages on our website.

Ford Foundation produces video on disability inclusion

The Heumann Perspective with Judith Heumann
VIDEO: The Heumann Perspective with Judith Heumann

The Ford Foundation has produced a short video that shows why disability rights are central to social justice work. You can read more about the Ford Foundation’s policy about including disabled people in their work here. To watch the video on the Foundation’s Facebook page, click here.

AZCentral.com Covers Our Disability Language Style Guide

AZCentral.com columnist Karina Bland discusses Amy Silverman’s experience updating our 2018 Disability Language Style Guide. Read the article here.

AZCentral.com highlights Amy Silverman's work to update the NCDJ's Disability Language Style Guide.

 

You can check out the web version of our style guide here.

Click here to download the 2018 NCDJ Disability Language Style Guide as a PDF.

 

 

 

 

May articles highlight “Mental Health Month”

May is Mental Health Month and numerous organizations and celebrities are speaking up to raise awareness about the often taboo topic.

In a report for Cronkite News journalist Luke Wright focuses on famous athletes who describe their experiences with depression, panic attacks and suicide. The report features athletes from sports including basketball, football and track. The statistics mentioned in the story may shock from readers, for example Wright reports that, “Nearly 24 percent of 465 athletes at NCAA Division I private universities reported a “clinically relevant” level of depression, according to a 2016 study by researchers at Drexel and Kean universities. Female athletes had a higher prevalence rate: 28 percent vs. 18 percent.”

The science magazine “Nature” also features a collection of articles this month focused on mental health awareness in the science research industry. One article by Emily Sohn reports that graduate students are especially vulnerable to mental illness and includes tips from mental health experts on how to avoid it. In an opinion essay for “Nature” scientist Dave Reay describes his symptoms of depression as a “black dog,” similar to the one Winston Churchill made famous, that haunted his pursuit of a Ph.D.

In a story for NBC’s “Today Show” reporter Cynthia McFadden interviewed three teenagers with mental health disorders reacting positively to the social media campaign #MyYoungerSelf. The campaign features candid testimonies from sports and entertainment celebrities describing their experiences living with depression and anxiety.

April 25 NCDJ workshop trains Arizona PIOs about basics of #DisabilityComm

On Wednesday, April 25 the National Center for Disability and Journalism partnered with Ability 360 and the Arizona Developmental Disabilities Planning Council to host a workshop titled “Improving Disability Communication” for local public information officers.

The goal of the workshop was to introduce public service employees to disability communication topics, styles and perspectives.

Activities included tutorials about disability language style and tips on making digital media accessible. Participants heard insightful testimonies from people with a variety of disabilities as well as local reporters who shape mass media stories.

Agency representatives at the workshop came from Department of Economic Security, Department of Transportation, State Parks and Trails, Department of Health Services and many others. A similar workshop is planned for September 21 at ASU’s Walter Cronkite School of Journalism and Mass Communication in downtown Phoenix and host local journalists and public relations executives.

NCDJ Director Kristin Gilger introduces participants and event coordinators at the start of the April 25, 2018 "Improving Disability Communication" workshop at Ability 360. About 30 workshop attendees sit around a horseshoe-shaped table facing three large projection screens.
NCDJ Director Kristin Gilger introduces participants and event coordinators at the start of the April 25, 2018 “Improving Disability Communication” workshop at Ability 360.
30 participants in the "Improving Disability Communication" workshop sit around a large horseshoe table listening to NCDJ Director Kristin Gilger, a petite blonde executive, explain the upcoming activities.
Attendees of the “Improving Disability Communication” workshop on April 25, 2018.
Tessa Ringo, a brunette woman in a blue dress, and her adolescent son Aiden, who has brunette hair and glasses and uses a wheelchair, describe their experiences discussing disabilities with acquaintances and reporters. They sit amongst a row of panelists and Tessa holds a portable microphone near her mouth.
Tessa Ringo and her son Aiden, who uses a wheelchair, describe their experiences discussing disabilities with acquaintances and reporters.
NCDJ Director Kristin Gilger stands in front of 3 project screens leading a tutorial about disability language styles.
NCDJ Director Kristin Gilger leads a workshop tutorial about disability language styles. A complete list of preferred language is available on the NCDJ’s website.
Loren Worthington (left) and Jennifer Longdon lead a tutorial on digital media accessibility and appropriate visual elements for disability stories.
Loren Worthington (left) and Jennifer Longdon lead a tutorial on digital media accessibility and appropriate visual elements for disability stories.
Local reporters sit together behind a large table speaking towards the workshop participants. Panelists include including Maria Polletta, Amy Silverman, Kathy Ritchie and Morgan Loew.
Local reporters (left to right) Maria Polletta, Amy Silverman, Kathy Ritchie and Morgan Loew share their experiences covering disability stories. Taken April 25, 2018 at the “Improving Disability Communication” workshop hosted by NCDJ, Ability 360 and Arizona Developmental Disabilities Planning Council.

Updates to key NCDJ resources, “Terminology Quiz” and “Language Style Guide”

Do you love writing, language and disability communication? Then check out our newest version of the NCDJ “Terminology Quiz” to test your knowledge of disability lingo. Even if you identify as a person with disabilities or work for and with people with disabilities you may be surprised which phrases are gaining popularity. For further reading, check out our complete “NCDJ Disability Language Style Guide.”

NCDJ in the news!

AZCentral.com columnist Karina Bland discusses Amy Silverman’s experience updating our 2018 Disability Language Style Guide (thank you, Amy!) Read the article here.

NCDJ

You can check out the web version of our style guide here.

Click here to download the 2018 NCDJ Disability Language Style Guide as a PDF.

Judy Woodruff, anchor and managing editor of the PBS NewsHour, shares her thoughts about fair and accurate coverage of people living with disabilities and the important work being done by the National Center on Disability and Journalism at Arizona State University.

Hawking’s death prompts debate on disability language

The death this week of theoretical physicist Stephen Hawking was mourned by millions of fans around the world. His passing also prompted several important conversations about how his disabilities should be discussed in the media, especially in the context of his remarkable professional achievements.

Several disability advocates on Twitter, such as Alice Wong, recommended writers “avoid subjective language” such as “suffered from ALS” and focus on Hawking’s scientific contributions without turning them into “inspiration porn.” Andrew Gurza, a self-described “Professional Queer Cripple” and creator of the podcast “Disability After Dark” wrote an opinion essay for Men’s Health explaining why wheelchair use shouldn’t be described as “confining” or something Hawking was “freed from.”

In an article for the Los Angeles Times, science reporter Jessica Roy quotes several disability experts who agreed Hawking’s advocacy for disability awareness should be more visible. In an interview on Wisconsin Public Radio Lawrence Carter-Long emphasized that Hawking didn’t “overcome his disability to achieve the things he did,” but instead he accomplished them “while he was disabled.”