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A person, not a patient: Words about the words we use

Preferred-terminology efforts are intended to reduce stigma and to more accurately reflect medical and scientific advances in diagnosis, treatment and recovery.

The main building of Willmar State Hospital circa 1920.
Courtesy of the Minnesota Historical Society

“Words matter,” says the American Psychiatric Association in its guide to preferred terminology around mental-health and substance-use disorders. The guide offers alternatives to language that might be construed as pejorative, patronizing, judgmental, offensive, euphemistic or just plain inaccurate.

For example: Instead of “She is a patient,” the preferred language is “She is a person who receives help/treatment for a mental health or substance use problem or psychiatric disability.” Instead of “Addict, abuser, junkie,” the preferred language is “Person with substance use disorder” or “Person experiencing alcohol/drug problem.” And instead of “He is brain damaged,” the preferred language is “He has brain injury.”

Several other organizations and advocacy groups also offer guidelines on dos and don’ts, including the Associated Press (which added a section on “mental illness” in its 2013 edition of the “AP Stylebook”), the University of Kansas Research and Training Center on Independent Living (which has a downloadable “Guidelines: How to Write and Report About People With Disabilities”), and the National Alliance on Mental Illness (which offers tips in an “Identity Guide” on its website).

All agree to the importance of using “person first” language: He or she is “a person living with schizophrenia,” not “a schizophrenic”; a “person with a substance use disorder,” not “an addict.” “Labeling the person as the disability [or disorder] … dehumanizes the individual and equates the condition with the person,” the University of Kansas guide says.

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Some advice seems obvious: “Do not use derogatory terms, such as insane, crazy/crazed, nuts or deranged, unless they are part of a quotation that is essential to the story,” the AP Stylebook says. Other recommendations are more subtle: The word “suffering,” for example, is often flagged as presumptive, pitying or fear-mongering.

The efforts are intended to reduce stigma and to more accurately reflect medical and scientific advances in diagnosis, treatment and recovery.

Not by words alone

It’s a start, anyway. But language alone can’t change perceptions and prejudices, says Patrick Corrigan, co-author of the 2001 book, “Don’t Call Me Nuts,” and a psychology professor at the Illinois Institute of Technology and director of the National Consortium on Stigma and Empowerment.

“The best way to change stigma is contact,” he said in a recent phone interview, “meeting people with serious mental illness, finding out that recovery is the rule and that they’re people like everyone else.” He likes to use this analogy: “If you are trying to change white people’s attitudes about black people, you don’t teach white people about Africa, you have white people meet black people.”

What’s often missing from the conversation is the idea (indeed the reality) of recovery, Corrigan said. “Whenever we focus on the illness or the diagnosis, we forget what the rule is, which is recovery. And so the public tends to think that the outcome for serious mental illness is a lot worse than it is. … Many people with serious mental illness get over it entirely – there is some evidence that a third to a half do. The remainder of them live with it like people with respiratory problems or heart problems.”

Adding recovery language to the culture will be a challenge, he said. “Recovery is a tough issue for journalists, because it’s boring. ‘When it bleeds it leads.’ ”

To anyone who would dismiss the effort as “political correctness,” Corrigan points to changes in the depiction of women in advertising, just in his lifetime alone. “We used women to sell products in extremely disrespectful ways that we wouldn’t tolerate at all today,” he said.

A trip back in time

To see how language has evolved, a few hours in the Minnesota Historical Society archives can be illustrative, or shocking, or both. Anyone who looks back with a modern (and superior) lens risks committing the unscholarly offense of “presentism” – interpreting the past anachronistically with present-day ideas and perspectives, and thus distorting history.

With this caveat in mind, I pulled a box from the Willmar State Asylum, circa 1913-18. The diagnoses on patient records include melancholia (high-grade, acute and chronic), developmental insanity, dementia praecox (paranoid, catatonic and hebephrenic), high-grade imbecile, constitutional inferiority, undifferential psychosis deterioration, manic depressive-depressive type, and “intoxication psychosis due to excessive use of snuff.”

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Staff observations of the residents’ affects, symptoms, habits and behaviors take the reader on a journey as harrowing and disturbing as Ken Kesey’s “One Flew Over the Cuckcoo’s Nest.” The notations include:

Stupid but neat.
Stands with arms folded.
Thinks she is connected with the Royal Houses of Germany.
Talks incessantly and hoards trash.
Has tendency to become fat.
Silly at times.
Thinks she is the superlative of everything.
Tractable, jovial and quiet.
Peculiar and does no work.
Sits with head hanging down.
Insists on being called Queen.
Easy to get along with, as long as no attention is paid to his eccentricities.

Among the residents were steelworkers, mothers, pharmacists and farmers. It’s impossible (presentism or no presentism) to put the lid back on the box without seeing their faces and imagining their daily lives.

‘Through a scrim’

Minnesota author Mary Logue also took a trip back in time – to solve the mystery of her Great Aunt Irene McNally’s seeming disappearance from the family. Logue’s research took her to the archives of the Fergus Falls State Hospital, where McNally had been admitted in 1925 (at age 24), briefly released and then readmitted for the rest of her life. She died there at age 66 in 1967.

Logue requested, and received, her great aunt’s medical files, and the effort to understand what they contained was unnerving and draining, an experience she recounts in her 1996 family history, “Halfway Home: A Granddaughter’s Biography.”

Irene McNally
Courtesy of Mary Logue
Irene McNally at the Fergus Falls State Hospital, left, and in
1964 after her lobotomy.

McNally’s medical files contain multiple diagnoses (nervous breakdown, attack, insanity, disorder, dementia praecox, paranoid type, manic-depression, mental illness), and describe treatments that included heavy sedatives, “camisole and foot-cuff” restraints, 64 electroshock treatments, and eventually a lobotomy. She is alternately observed as “silly, changeable, abusive, violent, combative.” After her lobotomy, she is “not as difficult as she used to be.”

Logue found herself asking: How did it happen to her? Why was she treated the way she was? How could they have treated her otherwise? How would she have been handled today? Would she have been given Prozac?

Trying to interpret the files was like “reading through a scrim,” Logue said in a recent interview.

There were no answers, of course, but Logue searched for them anyway. She sent her great aunt’s file to a Mayo clinician to run it through the lens of modern medicine. He gave a more contemporary diagnosis, along with a compassionate interpretation of family dynamics. He also said, curiously, “In addition, she [Irene] was obnoxious, and at the time she was alive, society had even less use for obnoxious women than they do now.”

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As she is a word person, Logue grabbed a dictionary to look up the word “obnoxious.” “Exposed or liable to injury” is given as the first definition, and “very unpleasant” is the second.

Logue decided that both applied equally to her great aunt. “If you didn’t behave the way you were supposed to behave, if you didn’t follow the norms, if you were out of the ordinary … then sometimes they would just put you away,” she said. “I made a pledge after that to be more obnoxious.”

The power to harm

As a writer, Logue chooses her words carefully. And so she takes the anti-stigma campaigns seriously, even as she admits that she might not always be as careful as she should be.

“I deeply believe that the words we use to describe something or someone are hugely important,” she said. “They carry judgment and a whole worldview almost. And they can really penalize someone.”