The Power of Words

By Nicole Koester

“Sticks and stones may break my bones, but names will never hurt me!”

Well, Mr. Alexander William Kinglake, I disagree. Maybe that was true back in 1830 when you authored the catchy phrase, but fast forward to 2019 and names do hurt. A lot.

Robert Fulghum (“All I Need to Know I Learned in Kindergarten”) corrected it: “Sticks and stones may break our bones, but words will break our hearts.”

Words certainly broke my sister’s heart, and I dare say played a part in her unexpected death.

Let me explain.

My older sister Angie was in her teens when doctors diagnosed her with bipolar disorder, sometimes called manic depression. For years, my parents struggled to find the right combination of counseling, medicine, and lifestyle changes to help her navigate her mental illness. She eventually learned to manage her disability and live what many would consider a full life. She attended college, married, and had two beautiful daughters. As a close sibling, I know Angie had a loving support system that frequently buoyed her. However, the cocoon of her family and friends was not enough to protect her from society’s ignorant and judgmental voices that stigmatize mental illness. The words ate my sister alive.

Scholarly research and substantial surveys explore the negative attitudes and stereotypes people still have toward those with mental illness. Clinical psychologist Michael Friedman stressed this argument in a Psychology Today article, “The Stigma of Mental Illness is Making us Sicker: Why mental illness should be a public priority.” Friedman writes that people often distance themselves from those with mental illness, who in turn may feel increasingly isolated and lonely. He references the strong link between social isolation and the deterioration of health, using Judith Shulevitz’s phrase, “the lethality of loneliness.” The lonely get sicker than the non-lonely, because they don’t have people to take care of them; they don’t have social support, Shulevitz wrote in The New Republic.

For more than three decades, my sister was labeled “crazy,” “nuts” and “insane.” Some people simply called her “bipolar,” but she was not bipolar. She had bipolar disorder. She was a mother, sister, daughter, employee and a friend. She didn’t define herself by her disability, but far too many people did.

Over time she developed what psychologists term “self-stigma”– diminished self-esteem. I am not a psychologist or doctor, but I watched as she absorbed the negative words. Fallacies about her self-worth gnawed at her. She felt that the conversation surrounding her disability and the words used to describe her were misguided and uninformed, and they minimized her as an individual.

Her body and maybe her mind eventually seemed to give up. She was found dead three years ago this month. Experts ruled out suicide, homicide and physical illness. Her death certificate reads “undetermined.”

Bipolar disorder did not kill my sister. But our family feels strongly the stigma surrounding her illness caused strain that her body could not bear.

My work at the National Center on Disability and Journalism is to honor my sister. The NCDJ’s mission is to offer education and guidance to journalists who write about people with disabilities or disability issues. Journalists understand the power of words.

So, for all the Angie’s out there, let’s make the words and phrases we use about disabilities both as accurate and as non-stigmatizing as possible. A person should not be defined by any one thing about them that does not come from their own choice ¬– because sticks and stones can break their hearts.

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

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.

Author, Rachel Levit Ades sits at a table in front of
Rachel Levit Ades, Blogger Disability Write 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.