People First, Disability Second

Medicine does not need more cryptic language. And so upon discovering PFL, I did not celebrate the arrival of a new acronym in the world of health-care communication.

What PFL stands for, on the other hand, we should all celebrate.

PFL is short for People First Language, a movement to promote dignity and inclusion for people with disabilities. And unless you’re a headline writer with space limitations, there is no good reason to shorten it. So, Delaware legislators, lose the acronym. But keep the concept. By all means, keep that going forward.

I learned about Delaware House Bill 416 from legal scholar Thaddeus Pope’s blog.

“The legislation creates no new rights or duties,” Pope writes. “But like new legislation in many other states, it improves the vocabulary and terminology in existing law relating to people with disabilities.” 

Some changes are fairly subtle: from “the disabled” to “persons with disability.” Others replace insensitivity with respect: Gone is the term “mental retardation,” in favor of “intellectual disability.” The purpose is to promote dignity and inclusion. You’ll find a chart with more People First examples on Pope’s blog.

“This language emphasizes that individuals are people first, and that their disabilities are secondary,” according to a summary of the bill.

Understanding and clarifying language was pivotal to the Harvard Community Ethics Committee’s recent study of recipient selection criteria for pediatric organ transplantation.

The CEC wrote: “Neurodevelopmental disability, intellectual disorders, and related terms may hold clear meaning for medical professionals and, more particularly, within a transplant center, but they do not seem to mean the same thing from center to center, and certainly they held no consistent or clear meaning among the members of the Community Ethics Committee.”

For patients and families, simply understanding what’s going on in a medical crisis is challenging enough. When consent is needed, obtuse, legalistic and cryptic language can render “informed” consent an absurdity. But so often that is the very language of consent forms.

The forms tend to be written by lawyers, and “lawyers are not good at plain language. We’re good at protecting our clients, but lawyers don’t think about patients understanding.” That from Chris Trudeau of Michigan-based Thomas M. Cooley Law School, in his presentation at the Institute of Medicine’s recent workshop on health literacy and informed consent.

So the Patient First movement’s attention to language is worthwhile -- and not simply for people with disabilities. The World Health Organization has found that even in translation, the world “intellectual” is better understood by more of the public than are “neurological” or “cognitive.” In its report on pediatric organ transplantation, the CEC embraced the term “intellectual developmental disorder” over alternatives for its potential for achieving understanding and engendering trust in the organ transplantation process.

As the World Health Organization said in a 2002 report: “Every human being can experience a decrement in health and thereby experience some disability. This is not something that happens to only a minority of humanity.”