Communicating Research Outcomes Sensitively Through Consistent Use of People-First Language

Joseph A. Balogun

Abstract

This Editorial is meant to highlight an important issue often taken for granted – communication. It was George Bernard Shaw who eloquently stated that the single biggest problem in communication is the illusion that it has taken place. The statement is as true in everyday verbal communication as in scientific writing. Quite often, a message is transmitted to whom it is meant to reach, but for it to be effective, the language must not demean the individual receiving the communication. In all discussions, including scientific writing, the tone of the language used matters. Thesensitivity of the language and content accuracy are the hallmarks of a useful report and presentation.What is the inspiration behind this Editorial? This commentary surreptitiously evolved from an unanticipated event in the Senate of the USA on March 28, 2019. The Secretary of Education, Betsy DeVos, while defending the elimination of funding for Special Olympics from her department budget used the term "disabled children" to describe school children with disability. The public outcry and condemnation of her language were overwhelming and swift. The blowback led President Trump with no choice but to override her decision and reinstated the budget for the Special Olympics. As a physical therapist, I cringe when I hear the elites use language that is insensitive to describe a patient or someone with a disability. More so, when I come across the use of any debasing language in biomedical journals, my emotion is exacerbated. I have decided to focus this commentary on this critical issue to educate and create awareness among the AJRH readership. Specifically, to promote the use of peoplefirst language - aka person-first language or identityfirst language or people-centered language (PFL) - in our daily discourse and publications.

But what is PFL?

It is a disability communication etiquette term used with the primary purpose to avoid stigmatization, and discrimination (either consciously or subconsciously) of people with medical diagnosis (such as chronic illness, disability, or mental illness) or socioeconomically disadvantaged groups such as the homeless1. Identity-first language avoids the use of labels or adjectives when referring to someone since the individual is seen first as a person and only secondly as a person with a medical diagnosis or disability. For example, referring to someone as ―a vesicovaginal fistula patient‖ is stigmatizing; the term ―a patient with vesicovaginal fistula‖ is preferred. Other examples of insensitive language that are unacceptable are presented in Table 1.What is the origin of PFL and how widely accepted is the term? The term PFL was coined in 1988 by advocacy groups in the USA. Some experts affirmed that it initially appeared within the Denver Principles Agreementin1983 at the peak of the AIDS epidemics2. Over the years, many professional associations, academic journals, federal and state governments around the world have promoted the use of PFL to address access issues and barriers to healthcare2-5. Some state governments in America have enacted legislation to bolster the use of PFL and ―promote dignity and inclusion for people with disabilities6. The use of PFL is not without controversy. Critics argued that it is "awkward, repetitive and makes for tiresome writing and reading"2. Other critics affirmed that the application of PFL is grandstanding and have the opposite effect for which it is intended because it masks the "source of positive identity and autism as an inherent part of an individual‟s identity. … I am Autistic. I am also East Asian,Chinese, U.S. American, a person of faith, leftist, and genderqueer. These are not qualities or conditions that I have. They are part of who I am. Being Autistic does not subtract from my value, worth, and dignity as a person”.

An anonymous person8 with autism bemoaned the use of PFL:

“I find people first language when it comes to autism highly offensive. Think of it this way. Autism shapes everything about me. It's what makes me, and not someone else. I'm autistic. I see differently, hear differently, think, and actdifferently than even the exact same me minus the autism would. Saying a person with autism makes a perfectly legitimate part of me sound like it's something horrible and undesirable, and therefore makes ME feel horrible and undesirable. We don't say a person with femaleness, or a person with young adulthood, or anything like that. Why would I want people to act like some legitimate part of me that I find no offense or shame in needs hiding or pussyfooting around?”

How common is the use of non-PFL in Reproductive Health journals? 

To objectively address this question, I conducted a literature search using three key-word combinations of: reproductive health,intervention studies, and patients (Table 2). From the literature search output, I reviewed the title of the first 50 articles to determine the prevalent use of non-PFL in Reproductive Health. All the 50 articles were published between January and March 2019, and six (12%) of the titles contained terms that tacitly promote marginalization. Buoyed by this finding, I decided to read the six manuscripts in its entirety. To my dismay, I found that the published articles contained non-PFL terms used on several occasions. It is disconcerting that the journals‘ peer review process failed to detect the use of non-PFL terms (Table 3).

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References

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