Wed, 8 Jan 2003 -- Media Matters No. 21:
Words have their own life

Our last Media Matters introduced you to the idea of using "banana words" -- words that are concrete and everyday, terms that lack jargon, so that the information you disseminate to the general public will be easily understood.

It's also important to be aware of another aspect of words -- that they have a life of their own, a life we can't very well control. Terms that mean one thing to "insiders" can often mean something very different to those coming from a different perspective. A good example is the term "independent living." It was coined back in the 1970s by disability advocates. People in California who founded the first Center for Independent Living in the nation, in Berkeley, included Ed Roberts, now often referred to as the "Father of the Independent Living movement." Roberts viewed independent living as "a sociological, political, and civil rights struggle."

An independent living center's purpose, according to those founders, was to work for barrier removal and to offer support services, including personal attendant services. It was run by the disabled people themselves -- which we in OUR "independent living movement" refer to as "consumer control." Nursing homes are the very opposite of the concept of "independent living" used by disability rights advocates. However, many nursing home companies have set up a new type of institutional housing -- they call it "independent living." When most people in the general public think of "independent living," they think of these congregate living facilities, run by nursing homes. The general public would not recognize the concept of "independent living" that NIDRR-funded researchers know.

Another term -- "personal attendant services" or "personal assistance services" -- is similarly unrecognized by the general public. Back in the 1980s it was the term that the disability rights kind of "independent living centers" created to define a service that disabled people themselves controlled. But the term used by the public today for having someone assist you in "activities of daily living" is "caregiver" or "caretaker." The idea of "consumer control" has no part in it.

It is crucial that we be aware that terms like these are understood differently by the general public. When we disseminate information, through reporters and the media, we must be sure that we explain clearly what terms like "independent living" mean in OUR materials. It never hurts to repeat explaining an important concept. And when we do that explaining, we should be sure to use "banana words" rather than jargon.

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