language

“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.

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.

 

 

 

 

Amy Silverman on the Challenges of Updating Our Disability Language Style Guide

Journalist and NCDJ board member Amy Silverman discusses the complexities of disability terminology and opens up about her experience updating our Disability Language Style Guide, a task she calls “one of the toughest assignments of my career.”

Read Amy Silverman’s blog post “Beyond the R-Word.”

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

disability language

Apple backs new disability emojis, including guide dog and prosthetic limbs

For years the popular communication symbols known as emojis have excluded disability symbols from their catalogue. Apple is hoping to change that by supporting a new proposal submitted to Unicode Consortium, the international non-profit that governs global emoji standards. The proposed new emojis include a guide dog with harness, a prosthetic arm and leg, male and female users of powered and manual wheelchairs, a hearing aid and person with a probing cane. In a report for CNN Money reporter Kaya Yurieff summarizes the Apple proposal and its significance.

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.”

Romanian mother resolves to change disability language in her country

By Jenna Miller

Nine years ago when Ruxandra Mateescu’s daughter, Olga, was born with special needs, she was stunned at the lack of information and the gaps in care.

“When Olga was born I tried to look up with Google what retarded means because the doctor said when she grew up she would be retarded or maybe dead or a vegetable. He used words like that,” Mateescu said in a Skype interview.

Mateescu lives in Bucharest, the capital city of Romania and is fluent in both English and Romanian. People with disabilities don’t have many rights in Romania, and much of the public is uninformed about disability issues, “like the fifties in the United States,” she said.

In addition, the Romanian health care system is difficult to navigate, Mateescu said, and she couldn’t figure out where to go to get more information about her child. Even after nine years and many doctors visits, Olga has never had an official diagnosis to classify her disability.

A journalist who worked for a parenting website, Mateescu did what came to her naturally: She started blogging about her daughter, their lives and the struggles she faced trying to find information and support. Other parents responded and asked her to keep writing. She now runs a website that features stories of people with disabilities and their families.

“I started writing when I was very angry, so my writing was very angry on everybody,” she said. “Many of them [other parents] told me that I was courageous… I don’t know.”

Mateescu said it was taboo in her country to even talk about disabilities when she started her blog, but the situation is slowly improving. Now there are more blogs devoted to the subject and mainstream media also has begun to show interest. However, Mateescu calls most of the reporting shallow and says the focus is “on the pity element.” Pejorative language and offensive terms are still common in mainstream news both on television and in newspapers.

“If experienced journalists are doing that, they don’t realize that it is wrong,” she said “Somebody has to say, it’s not okay– this is how you do it.”

One day Mateescu was searching the internet for resources on disability issues and she happened upon the National Center on Disability and Journalism’s style guide, which provides guidance on words and terms related to disability. She thought it would be a great help to journalists and communicators in her country, but there was a problem: The English language guide would have to be translated into Romanian.

She started by sending an email to the center at Arizona State University asking for permission to undertake a translation. “I wrote and I said, ‘Well, they will never answer back they are huge,’ and I received the email one morning, and I was like ‘Wow, they answered.’ We are not used to that reaction of kindness.”

Across the world in Phoenix, Arizona, NCDJ Director Kristin Gilger said she had long hoped to have the guide, which contains almost 100 words and terms, translated into other languages. She immediately said yes.

Mateescu then put out a call on social media for help. Seven volunteers responded — friends, relatives and even an English teacher who happened to be her manicurist’s husband. Together they combed through the guide. Some words didn’t translate or didn’t exist in Romanian. For those, the group did their best to supply the closest Romanian approximation. They worked quickly. It took one week to translate the guide and another to check it and get it ready for publication.

Once completed, Mateescu tried to get the style guide out to as many people as possible by posting it on her website and on social media. She said she immediately starting getting “likes” and “shares.” She is now setting up meetings with journalists and parents to discuss the guide and advocate for its use by Romanian journalists.

Along with improvements in language, Mateescu hopes to see more investigative stories about the lack of support and infrastructure for people with disabilities in her country. According to a report compiled by the Academic Network of European Disability Experts, 24 percent of children with disabilities in Romania are not registered for any form of education. The 24 percent includes Mateescu’s daughter, Olga.

The situation isn’t much better for adults with disabilities. The same report shows that fewer than 16 percent of people with disabilities are employed. It is common for people to stop and stare at people with visible disabilities in public. And Mateescu says it’s almost impossible for people with physical disabilities to get around her home city of Bucharest. Many public buildings, busses and metro stations don’t have elevators or ramps, and most homes are difficult to get into and out of for those using wheelchairs.

Mateescu says it is painful to think about the challenges her daughter will face when she grows up, but she tries to focus on fighting for the things she can change.

“I don’t know if my daughter will have some benefits from that, but, for sure, the next generation of parents will be much better off than my generation is now,” she said.

NCDJ featured in CJR article on tips for covering disability beat

Wendy Lu from the Columbia Journalism Review interviewed NCDJ Director Kristin Gilger about this site’s advice for covering disability beats. Some top recommendations include being wary of “inspiration porn” and avoiding words that “assume a negative relationship between people and their disabilities (e.g. wheelchair-bound).” Check out more tips from the article by clicking HERE.