The Language of Culture Change

"Mayday"

by Karen Schoeneman

I’ve always been a fan of words. When I was young, I’d spend hours browsing through a 20-pound unabridged dictionary that gave the histories of words as well as their meanings. I’ve just recently found out why people shout “Mayday” when their ship or plane is in trouble. It’s a misspelling of the French, “m’aidez” which means “help me,” and is pronounced “mayday.” Well, today, I’d like to shout “Mayday” for help with my words.

I’ve worked 30 years in long-term care. Over that time, I’ve come to realize that much of the language we use is in need of replacement because it unintentionally demeans people, contributing to a hierarchical sense of “us and them” or a dehumanizing institutional culture instead of a nurturing community with respect for its members.

When I started working in long-term care in 1972, I worked in a “State School and Hospital” with “inmates” who were called “retarded” and categorized as “moron,” “idiot,” “imbecile,” “mongoloid.” Those words were not intended as insults, just diagnoses. We’ve already come a long way from there, but we still have far to go. And those of us who came from a past that accepted words like these need help—your help—to upgrade our institutionalized brains.

Part of transforming long-term care practice is finding new words to describe staff, programs, parts of the building, and the “industry” itself. As I’ve attended Pioneer and Eden conferences, I’ve been immersed in a new type of language called “person-centered.” The idea behind person-centered language is to acknowledge and respect long-term care residents as individuals. Using person-centered language, I’ve learned, is often as simple as reversing common phrases to put the person first and the characteristic second. “A wheelchair-bound resident," for instance, becomes “a person who uses a wheelchair for mobility,” and “a feeder" becomes “someone who needs assistance with dining.”

A few years ago I wrote an article about this subject for Provider magazine and invited readers to e-mail me words and phrases they thought were outdated, along with their suggestions for what to use instead. Look at the word “therapy,” for instance. Why does everything have to be therapy once you live in a nursing home? If I liked to paint before I moved into the nursing home and I paint now that I’m there, why is my hobby now “art therapy?” I mean no insult to the wonderful folks who call themselves therapists and their work, their special training, or their skills. In fact, I’m a massage therapist myself. But in this context, “therapy” is another of those separating words.

This list below is a collection of suggestions culled from the many responses I received from readers of Provider, along with some additions from friends and colleagues and a few thoughts of my own. The list is not definitive, and I am not its keeper. It’s not up to me to say whether these words are our best or only choices, but I do know they’re a start, so I’m sharing them in hopes that they’ll spur more thinking and discussion. If you have words to add to the list, please send them to the Pioneer Network. Entries will be added below.

The language of long-term care belongs to all of us—not only the “us” who work in this field but, at least as importantly, the elders and others with disabilities who require long-term care services, their families, and the public at large. The most urgent task we face may be agreeing which “bad” old words to throw away.

Finding new ones should be easier. After all, that’s just a matter of choosing words that are both accurate and respectful, and that unabridged dictionary is full of good words.

Karen Schoeneman is a senior policy analyst in the Division of Nursing Homes in the Centers for Medicare and Medicaid Services. The opinions expressed in this article are those of the author and not necessarily shared by CMS.

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