Disability and Language

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I recently found myself in the middle of an intense inter-community debate regarding whether the term “disabled people” or “people with disabilities” should be used when speaking of people who have disabilities. I personally prefer to describe myself as a person with a disability (hard-of-hearing, to be exact), but there are many people within the disability community who object to the term and would describe themselves as disabled people. As that article highlights:

The description “disabled people” is preferred by people who follow the social model of disability, which prefers the term “impairment” to describe our conditions and argues that “disability” is caused by barriers put in place by society to prevent people with impairments accessing society “normally.’”

This is certainly true, but the barriers society has put in place regarding disability are often not fully realized by most people. I’ve lost count of how many times someone claims they “don’t need a microphone,” ignoring hard-of-hearing folks who won’t be able to hear without a microphone no matter how loudly the speaker projects. Unfortunately, society as a whole still views disability as a negative thing. The AMA Manual of Style combats such negativity by emphasizing “people-first” language. The style guide’s section on inclusive language advises writers to “avoid labeling (and thus equating) people with their disabilities or diseases (eg, the blind, schizophrenics, epileptics). Instead, put the person first.” In describing myself as a person with a disability, rather than a disabled person, I avoid defining myself solely by my hearing loss (not to mention the negative connotations that society has given the term “disabled”).  The same must be done when discussing patients or study participants. Avoid using phrases such as “confined to a wheelchair,” which implies that the person is somehow limited or by their wheelchair use. Instead, “uses a wheelchair” is preferable.

It is similarly important to avoid words or phrases that imply helplessness on the part of people who have experienced illness or trauma. For this reason, the style guide advises against using the term “victim”: instead of “victim of trauma” or “stroke victim,” use “survivor of trauma” or “person who has had a stroke.”

Use of people-first language and avoidance of emotion-laden terms such as “suffering” and “victim” offer patients autonomy and dignity even as they’re being written about anonymously in a journal publication that thousands of people read every day.—Suzanne Walker

 

 

 

Death Sentences

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Could it really be 15 years since we waited in this funeral home parking lot for a wake to begin? It seems only last week that we were here for her mother. Both women are now gone from our lives, too soon. We steel ourselves for a few moments more but exit the car when her grandmother arrives. I take the small woman’s frail arm, opposite the one holding a cane, and walk my mother-in-law into the building.

The funeral parlor hasn’t changed much. In place of easels with poster boards full of family photographs, a large-screen monitor at the back of the room runs a PowerPoint file chronicling my niece’s life. Friends and family watch and smile as they recognize themselves in photographs from happier days.

Funeral parlor conversations haven’t changed much either. She “passed away,” “is in a better place,” and “is at peace.” Most conversations are in those soft tones reserved for such occasions. Quiet laughter, though, is heard every so often as stories about fun times are retold.

Wikipedia includes a table of more than 131 expressions related to death categorized as slang, polite, formal, humorous, and so forth. In my work as a medical copy editor, we encounter expressions for death in many forms.

Large clinical trials may include a Kaplan-Meier graph illustrating mortality, with each treatment group represented by a curve that shows the percentage or proportion of patients still alive as follow-up progressed. The number of patients at risk at regular time intervals is provided in a table; the values dwindle as they advance in pace with the downward trajectory of their group’s curve. Text descriptions may list the different causes of death with a simple “(n = X)” after each one. “Seventy-two patients with visual impairment died during follow-up: myocardial infarction (n = 27), respiratory disease (n = 18), and renal disease (n = 12) were the causes most often listed for patients with this information.”

Case reports provide narratives of a single patient from presentation to the end of follow-up or death. In these manuscripts, I’m more likely to encounter euphemisms (taken from the Greek eu, “good,” and pheme, “voice”). The AMA Manual of Style describes euphemisms as “indirect terms used to express something unpleasant,” and states that “directness is better in scientific writing.” Part of my job, then, is to replace the euphemisms: patients died rather than succumbed or passed away.

Even reports of animal studies are not immune to the appearance of euphemisms. Such studies typically require the animal’s death to allow for dissection and subsequent measurement of bone, tissue, or ligament to assess outcomes. However, even in these manuscripts, I often replace sacrificed or euthanized with killed or humanely killed.

The Manual’s chapter on correct and preferred usage further states that “persons die of, not from, specific diseases or disorders.” An example of this usage could be the written as: “She died of complications of renal failure.”

Scientific reports may seem clinical and removed; patients may be grouped and their mortality is frequently categorized. Nevertheless, individual lives underlie advances in medical science. Although euphemisms seem called for when discussing the deaths of people we love, direct language, such as that used in our work, is no less respectful.—Connie Manno, ELS

 

Stranger Than Fiction

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Like many others working at JAMA Network, I’m a writer as well as an editor—and not just of blog posts! I’ve written the script for a graphic novel, Mooncakes, that will be published in 2019, and my first short story was published last year. I’ve been writing science fiction and fantasy for a long time now, but I only started working as a manuscript editor for the JAMA Network 3 years ago. Since I’ve started working here, a question I get asked frequently is: how has editing medical articles and working with AMA style affected your writing?

The short and simple answer is: not much. Science fiction writing and medical writing are such vastly different spheres that it’s pretty easy for me to ignore my medical editing brain when writing, or when I’m editing my fellow writers’ stories.

However, the long answer is a bit more complicated. I can ignore my medical editing instincts, but I can’t ever fully turn them off—I have to restrain myself from changing “though” to “although,” or “compared to” to “compared with,” if making that kind of a change would interfere with the author’s or character’s voice.

Other times, though (see what I did there?), I’ve found that listening to my AMA-editor voice has made me a better writer. For one thing, it’s encouraged me to be more succinct. My colleague Iris Lo wrote a post about removing redundancies in a manuscript, and I’ve found that this is an important guiding principle in all genres of writing. It’s especially useful when writing short stories—I have a tendency to be overly verbose in my writing, but in a tale of 4000 words or less, every word needs to matter. When I look back at my writing from 3 years ago and compare it to my writing now, I’ve found that my prose is sharper, and I’m enjoying my first publication success as a result. Most of that is just the natural shape of writing progression, but I’d be remiss if I didn’t attribute a part of it to my work here at the AMA.

And, every so often, I’ll have a character say “compared with” instead of “compared to.” Because grammar sticklers exist in every universe!—Suzanne Walker

 

 

The Proliferation of Wellness

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My interest was piqued by this post on Language Log exploring the ubiquity of the word wellness. It’s a trend I might never have noticed, but now that it’s been brought to my attention I have to admit that wellness is everywhere.

For many, wellness connotes a certain touchy-feeliness that health doesn’t, in particular the integration of mental, emotional, and even social well-being into the concept of health. In this sense it’s very much a word for our times, as science explores the physiological effects of practices like meditation and mental health is discussed more openly. A New York Times article from 2010 referenced in the blog post gives some of the background on the burgeoning popularity of wellness over the years. The author notes that the word has become more popular as society expands its notion of what it means to be healthy. The article traces the origins of this mindset back to the mid twentieth century, quoting from the preamble to the World Health Organization’s 1948 constitution: “Health is a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity.” On the flip side, to some wellness has a whiff of the unscientific; one of the commenters on the blog post recalls seeing the word used extensively in sales pitches for alternative medicine.

What makes wellness such a hot property? As Mark Liberman of Language Log points out, wellness has a ring of positivity to it that health doesn’t: “My impression is that ‘health’ has become too much about negatively associated things like doctors, hospitals, insurance companies, and giant pharmaceutical firms—and it was never rigorously positive enough anyhow, since you can have good health or bad health. There’s no such thing as bad wellness.”—Heather Green

 

 

Medical Literature and “Forbidden Words”

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On December 15, 2017, reports emerged that staff at the Centers for Disease Control and Prevention (CDC) were presented with a list of 7 forbidden words or phrases (ie, diversity, transgender, vulnerable, fetus, entitlement, evidence-based, and science-based) when writing budget appropriation requests. Since then, officials from the Department of Health and Human Services clarified the situation, saying that these words should be avoided but were not necessarily prohibited. Regardless, physicians, researchers, marginalized people and their allies, and others have spoken out against this. What is the importance of these words in a medical research context, and what does the AMA Manual of Style say about usage?

Diversity

Including men and women of different races/ethnicities is imperative to research, particularly for understanding drug outcomes. For example, male and female bodies metabolize drugs at different rates. Because women wake faster from sedation with anesthetics, they recover at a slower rate and report more pain events than men. Not including both male and female participants in a study could lead to incomplete results. Race and ethnicity are also important to incorporate in medical research because specific diseases or disorders may be more pertinent in certain groups, such as chronic hepatitis B in Asians and Pacific Islanders or Tay-Sachs disease in the Ashkenazi Jewish population.

Transgender

Transgender refers to people whose gender identity differs from the sex they were assigned at birth. Transgender health care is unique and differs from cisgender health care. Besides gender reassignment surgery, transgender patients may also require special care concerning mental health or substance dependence.

Vulnerable

Clinically vulnerable populations may include persons with Medicaid, no health insurance, low educational attainment, limited English proficiency, and members of racial/ethnic minority groups.

Fetus

A fetus is the unborn offspring in the postembryonic period, after major structures have been outlined. Per AMA style, neonates or newborns are persons from birth to 1 month of age, and infants are children aged 1 month to 1 year. There is a clear difference between a fetus and a newborn or infant. Fetus is a medical term and is not open to political or social interpretation.

Entitlement

Government programs that give assistance to anyone who qualifies are called entitlements. For example, Medicaid, the Children’s Medical Security Plan, and the Vaccines for Children Program are entitlement programs. These types of programs are important for those who may not have easy access to health care.

Evidence-based and science-based

According to some reports, these phrases should be replaced with “CDC bases its recommendations on science in consideration with community standards and wishes.” Evidence-based medicine applies the best evidence from rigorous studies (eg, randomized clinical trials) to clinical decision making, and hopefully, to policies. Without evidence-based medicine, clinicians may not be using the best knowledge base when treating patients.

Even if these words are actually banned from use in CDC budget requests, it is important to note that medical journals with true editorial freedom would theoretically never fall into a similar situation. Editors and publishers/owners must guard against the influence of external commercial and political interests (as well as personal self-interest) on editorial decisions. Editors of such journals should not comply with external pressure from any party that may compromise their autonomy or of their journal’s integrity. The AMA Manual of Style notes these examples, among many others, of inappropriate pressure:

  • Pressure from an owner or a politically powerful or motivated individual or group on the editor to avoid publishing certain types of articles or to publish a specific article
  • Compliance with governmental or other external policy to not consider manuscripts from authors based on their nationality, ethnicity, race, political beliefs, or religion

Read more about editorial freedom and integrity of medical journals in AMA 5.10.—Iris Lo

Pharmaceutical Company Names

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The pharmaceutical industry is ever-changing, and it’s hard to keep up with new ownership and branding. When editing sections of manuscripts with a lot of pharmaceutical company names, such as the conflict of interest disclosures, I typically find all sorts of spellings of the names, even for the same company within the same paragraph. According to the Business Firms subsection (14.7) of the AMA Manual of Style, the name of the company should appear exactly as the company uses it but with omission of the period after abbreviations. Furthermore, terms such as Company and Corporation should be spelled out if the term is spelled out in the company name. The best way to determine how to spell a company’s name is to check the official company website. Following are a few examples of company names that I frequently see misspelled or misrepresented:

Boehringer Ingelheim

Bristol-Myers Squibb

Daiichi Sankyo (hyphenated in the logo but not elsewhere on the company website)

Eli Lilly and Company

GlaxoSmithKline

Merck & Co

Also keep in mind that some pharmaceutical companies have multiple business units (ie, biologics, medical devices) or different names depending on the country. In these cases, it may be necessary to query the author to ensure that the correct name is used.—Sara M. Billings

 

The Biting Edge of Science

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After reading Gabriel’s last post regarding modern preconceptions of premodern physicians and caregivers, I was reminded of an old New Yorker article on leeches that I had only recently read. (I used to subscribe to the New Yorker and have a backlog of old issues.) The article is about an American-born zoologist, Roy T. Sawyer, who was reintroducing the ancient practice of using leeches for medicinal purposes. Sawyer is the founder of Biopharm (an international company and leech farm based in Hendy, South Wales in the United Kingdom) and the author of Leech Biology and Behaviour. In 1983, he created Biopharm with the goal of identifying all the curative chemicals in the leech.

The earliest references to the medicinal uses of leeches appear in ancient Sanskrit writings. Indian physicians applied leeches to snakebites and boils and around diseased eyes. Asian healers mixed dried leeches in water for a variety of symptoms. However, just like bloodletting and trepanning, the use of leeches in medicine came to be viewed as barbaric and devoid of any legitimate purpose. Sawyer has helped to change the misconceptions many hold about the medicinal uses of leeches.

There are more than 650 species of leech. Hirudo medicinales is the primary species that is used for medical purposes. In the course of writing his book, Sawyer became convinced that the medicinal uses of leeches in the past were “based on a high degree of evolutionary adaptation.” In 1884, a British physiologist identified the anticoagulant hirudin in the saliva of H medicinales. Subsequently, it was purified in the 1950s and cloned in 1986.

Like most species of leech, H medicinales has 3 jaws designed for sucking blood, and each jaw has about 100 teeth.* These “medicinal leeches” secrete saliva containing several chemical compounds that are injected into a wound while it is feeding. As already mentioned, hirudin is a powerful anticoagulant; calin is another chemical (ie, a platelet adhesion inhibitor) that is responsible for prolonged bleeding, and it is this continual flow of blood that can provide the time needed for a body part or appendage to reestablish its own circulation after microsurgery. The leech decongests blood as it feeds and promotes continual decongestion long after it has finished feeding and has dropped off.

Roy T. Sawyer’s findings seems to be in line with the finding of the 2 researchers at the University of Nottingham mentioned in Gabriel’s post, the ones who made that surprising medical discovery in an enigmatic 1000-year-old text called Bald’s Leechbook. Also, I like the slogan of Sawyer’s company, Biopharm Leeches: “The Biting Edge of Science.”—Paul Ruich

 

 

*Editor’s note: I think they’re kind of cute! 

 

About Semicolons

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Like a few others in the JAMA Network office, my other life has involved creative writing. Although you’d have to look one cubicle past mine to find someone with a Master of Fine Arts in the subject, I managed to walk fairly deep into creative nonfiction—enough to have published a bunch of essays, in fact.

My other other life has been in health research, so I’m right at home at JAMA Network. But I’m still reminded of creative work sometimes. In particular, semicolons work for me like a weird little literary siren song. No matter how technical the article I’m editing is, the sight of a semicolon tends to bring to mind the novelists Kurt Vonnegut and Aleksandar Hemon.

It’s Vonnegut who strikes first and hardest. In one of his many musings on the craft of writing, the Slaughterhouse Five author once wrote, “First rule: Do not use semicolons… All they do is show you’ve been to college.”

When I read it, I thought of how much I liked the guy—even though I actually don’t agree with his grammatical idea. I think semicolons exist for more than one reason; they serve at least 2 grammatical purposes, and the best of them can work almost like a musical note.

First, there’s the grammatical part. The purpose of a semicolon is to not only to act as a connection between 2 independent sentences that are complete in themselves. It’s also a sort of super-charged comma. It’s a way to separate clauses that already contain commas without adding any confusion for the reader.

Here’s an example from the AMA Manual of Style (which itself explains semicolon use): “Often a comma will suffice if sentences are short; but when the main clauses are long and joined by coordinating conjunctions or conjunctive adverbs, especially if 1 of the clauses has internal punctuation, use a semicolon.” That’s the first use: a semicolon that connects 2 complete sentences. (The Manual notes a similar use for enumerated lists presented in a sentence.)

Here’s another sentence, which needs semicolons even though it lacks independent clauses: “Data collection occurred at health care facilities in Hinode Mizuho, Nishitama district, Tokyo, Japan; Ålesund, Møre og Romsdal, Norway; New York, New York; and Rochester, Minnesota.” Semicolons offer clarity here. Using only commas here would make it harder to determine the number of places listed, while semicolons help the reader infer that there were 4.

The third use of semicolons is to put 2 ideas that go together close beside each other. This is less a matter of grammar than a matter of flow, speed, or style. Sometimes, connecting sentences with a semicolon means that, despite their independence, they read as a single complete thought. Here’s an excellent (nonmedical) example: “The driver’s head was cubical, vines of hair creeping up his neck; there was a gray swirl around his bald spot, not unlike a satellite picture of a hurricane.”

That’s the work of Aleksandar Hemon, the other writer who semicolons bring to my mind. Hemon is an established author and TV scriptwriter (disclosure: he has also been an acquaintance of mine). In a review of one of his books, Hemon is described as “ragingly addicted to semicolons…. You get the feeling that if he ever somehow failed to sneak at least one semicolon into a paragraph, he might suffer some kind of syntactic withdrawal—his overworked right-hand pinkie finger would start to sweat and twitch uncontrollably over its home-key, until he managed to calm himself down with the methadone of a comma splice or an em dash.” (The reviewer furnishes several amusing examples.) Notably, the review is positive, even effusive; the writer describes Hemon’s semicolon use as in part a rhythmic motif.

No word on published research into that particular disorder of semicolon withdrawal, but this makes a good point: Vonnegut can be right. Semicolons can go too far. In Hemon’s case, it’s a matter of stringing multiple sentences together like beads on a necklace. In JAMA Network journals, it’s more often a case of authors placing semicolons in sentences that need only commas (“Data collection occurred in Japan; Norway; and the United States” when “…Japan, Norway, and the United States” would do, for example).

But I can’t criticize. When my life was still centered on creative writing, I once wrote an essay about the work of Aleksandar Hemon (warning: it contains swear words and descriptions of violence). I just checked, and it appears I didn’t go light on the fancy punctuation. Vonnegut’s established disapproval aside, I’d used semicolons 6 times.—Sophia Newman

Faster Than a Sentence Fragment

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My dad held onto his old comic books from when he was a kid — Mad Magazine, Spider-Man, X-Men, and Batman. I know it’s unoriginal, but how could I not fall for the Caped Crusader? I romanticized Batman’s brand of justice: smart, deliberate, vigilante, under the cover of darkness, and always, always for Good. I read both crates of my dad’s comics when I was a boy, but Batman was the only series I came back to as I got older. I took the stories and their Good and Bad morality seriously.

Now I’m an adult and a professional editor. I thought characters like Batman didn’t exist off the page. Then I heard about the Grammar Vigilante. It’s relatively old news, but I only heard about the Grammar Vigilante last month. He’s been correcting storefronts in Bristol, England, for 13 years. When he sees an incorrect apostrophe (“Amy’s Nail’s” is one example), he goes out at night with his homemade Apostrophiser to correct the mistake by covering it with a colored sticker. That’s the kind of real-world vigilante justice I can get behind, and it’s something almost anyone reading this blog can chuckle about.

Strangely, I look at the Grammar Vigilante as seriously as I did Batman. What strikes me is his belief in making these corrections despite the risks. “I do think it’s a cause worth pursuing,” he says in the video. He denies his actions are a crime, quipping, “It’s more of a crime to have the apostrophes wrong in the first place.” Despite the joke, he defaces private property and could face legal action if he is caught.

I believe in the Grammar Vigilante.  The AMA Manual of Style includes chapters on grammar, plurals, and capitalization and quite long chapters on punctuation and correct and preferred usage. As the lattermost suggests, some of these rules are up to interpretation or preference but others are simply right. The primary goal of the written word is to communicate, and that is done most effectively, with the least confusion, using proper grammar and punctuation.

I have a personal tie-in to all of this. In high school, I worked as a server at a restaurant. One day, one of the managers posted a long document about new policies and expectations with explanations for each change. I read it standing next to a coworker and said that I wished I could copy edit the sheet to fix some small errors. She turned to me and looked hurt and disgusted, told me that was insulting, and said that nobody else cares about the right way.

I felt embarrassed, and I didn’t talk about the sheet with anyone else. I didn’t have the ability to put it into words then and still struggle arguing it now, but improper grammar, no matter how small, obscures meaning and harms interpretation. Proper grammar and punctuation aids my reading just as much as it does for those who don’t know or don’t care about it.

Are the Grammar Vigilante’s corrections helpful? Or pretentious? Or even noticed by most? Is there a difference between correcting public storefronts and private postings? By Batman’s morality, is he doing Good or Bad? I don’t know, but I support what he does. He’s not a hero, but I think he’s a silent guardian, a watchful protector. He’s my real-life Dark Knight.—Kevin Brown

A Due Diligence Excursion Into Nomenclature

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You might know the definition of the word “excursion” as it relates to leisure activity. You may also consider its technical definition, which is to do with the movement of something along a path. I recall an unexpected delight once while reading some Prescribing Information. A statement about drug storage and handling indicated that the drug can be stored for up to 4 months at 25°C (77°F). The kicker for me was “excursions permitted to 15-30°C (59-86°F).”

Excursion? Sounds like that drug is in for a treat.

My earliest excursion into professional proofreading and copyediting occurred at a law firm. The required confidentiality agreement lit a fire in me as an initiation into specialized knowledge.

Good, I will know something I am not allowed to talk about.

Flushed with triumph, I sat down to read contracts, deeds, torts, and trusts. Page by page, section by section, paragraph by paragraph, unwieldy sentence by unwieldy sentence, clause by clause, parenthetical phrase by parenthetical phrase.

Confidentiality agreement? A few months into the job revealed that agreement to be a formality. I couldn’t have blabbed about any deals had I wanted to (putting aside the question of who would want to be told any of what I was reading). The baroque legal prose lent itself to pattern recognition instead of language comprehension.

Particular phrasing has stayed with me. Pursuant to. Indemnify, defend, and hold harmless. Any and all claims that arise from or relate to. Including without limitation. As herein before stated. Some terminology has migrated into general use, as when you overhear someone say into a phone, “Do your due diligence, dude.” As a synonym for “preparation,” there are worse choices.

Performing due diligence is a vital component of processing articles for JAMA Network journals. In manuscript editing, the biggest confidentiality issue is the embargoed proof. Knowledge across the specialty journals is not meant to be confidential (after publication). The spread of knowledge requires fixed meanings—or at least is greatly helped by it.

Words slip out of professional and into general use, and from general into professional (although I don’t know the origin of “excursion” in Prescribing Information). A migrated term can lend a patina of mindfulness—“curate” is no longer a member of the clergy in an Anthony Trollope novel but a thing one does on behalf of one’s own “brand”—which once meant the maker of cereal you preferred to eat but now means something like the self you present to the world. Word migration can veer into pretension, depending on your personal threshold.

We routinely consult the AMA Manual of Style to solve usage issues in preparing an article for publication. Changes in usage can be exciting. The manual is too sophisticated to be merely proscriptive; if you admire change, you will find plentiful discussion. If, however, you find yourself wishing to sample a lexicon with a heritage of stability, the AMA Manual of Style is at your service.

Your well-thumbed manual may focus your attention on references, usage, conversion factors, and abbreviations. We all need reminders for those principles that don’t stay in our heads. That raises a question. What about what is not in in our heads to begin with?

You won’t know that you don’t know nomenclature unless you are exposed to what there is to know. Make an excursion into Chapter 15, Nomenclature, the single longest chapter in the manual (followed, in a bit of poetic juxtaposition, by what is likely the shortest, the 5-page treatise on Eponyms).

Why stroll through a 250-page chapter with 17 segments? You will encounter terms for Equipment, Devices, and Reagents, a lexicon of Immunology, and vernacular names for Organisms and Pathogens. One reason to move along this path is that, while editing, you may not realize that usage in your article is imprecise or incorrect. Maybe the author inadvertently mixed up 2 conventions in a single term. The term looks scientific and the author is both MD and PhD, so you might move along with your next task in mind. Perusing Chapter 15, though, can orient you toward terminology in a way that can help you know when to clean it up.

Even though the chapter is enormous, its rationale is simple: “to present style for terms and to explain terms in hopes that they are more easily dealt with.”

In my book, that’s grounds for an excursion.—Timothy Gray