July 25, 2004

Descriptive Terminology for Macular Degeneration

Posted in: Daily Living

by Dan Roberts
Originally published July 2004

By their choice of words, eye care professionals, public relations writers and media reporters hold the power to influence the psychological impact of macular degeneration on newly-diagnosed patients. This article attempts to bring awareness of terminology that is both accurate and sensitive to patient welfare, thereby establishing a directive for proper usage.

“Political correctness” is not the issue here. Rather, it is whether or not certain words and phrases are proper by definition. The terms “blind” and “afflicted,” for example, are not necessarily offensive, but they are incorrect as descriptions of macular degeneration and how it affects the experienced patient psychologically. It is true that newly-diagnosed patients often feel “afflicted,” but this kind of distress hopefully eases as they learn more about their condition and how to deal with it effectively.

Incorrect terminology

Consultation with eye care professionals and results from a survey of 23 macular degeneration patients have yielded the following common words and phrases, which do not accurately describe either the physical or the psychological condition of a person with visual impairment.

Nouns:

affliction
blindness
handicap
sufferer
victim

Adjectives:

afflicted
blind
handicapped
legally blind (an arbitrary acuity measurement for determining qualification for government aid and benefits. Varies widely among different countries and is not meant to describe visual ability.)
vision impaired (“Vision” commonly refers to more than eyesight, so it is best avoided.)

Verbs:

afflict
blind
handicap
crippled [by]
suffer (intransitive, i.e. “I suffer from AMD”)

The following words, and all synonyms of these words, are commonly used for dramatic effect or personal gain. Such usages can be detrimental to the psychological health of the patient and only serve to fuel the fires of emotion following initial diagnosis. This, unfortunately, is the goal in some instances.

blinding
crippling
devastating
distressing
fearful
frightful
grievous
insidious
life-ruining
life-wrecking
sinister
terrible
viscious

Here are excerpts from a single solicitation letter that was mailed to millions of senior adults across the country. It serves as one of the most blatant examples of this kind of emotional exploitation.

“Our . . . program is launching a major scientific assault on this life-wrecking disease.”

“The damage [macular degeneration] does is truly crippling.”

“. . . you’ll be legally blind with your chances for full, happy, and vigorous golden years shattered!”

“. . . it may be a long time before our macular degeneration researchers are able to make short work of this life-ruining disease.”

“The sooner we have the needed funds in hand, the sooner our all-out scientific assault on macular degeneration can put an end to this viscious disease!”

To further illustrate the problem, here are quotes from the kinds of news items that are almost daily occurances in the media. (Names have been changed to protect privacy.)

“[John] lived in [Springfield], Ga., with his beloved wife, Mary. It was while there that [John] was diagnosed with macular degeneration, an insidious eye disease that eventually renders a person blind.”

“[Steve’s] family says [he] suffered from macular degeneration — a condition that slowly blinds its victims.”

“The FDA’s decision . . . puts us one step closer to making available a therapy that may change outcomes for people with this devastating disease.”

This kind of language seriously counters the proper education and emotional welfare of newly diagnosed patients. For that reason, accurate and well-established terminology is offered here, and its use should be encouraged and expected within the entire professional community.

Correct terminology

The following words and phrases accurately describe either the condition or the patient. The terminology has been deemed appropriate by unanimous concensus of the major patient advocacy organizations (Low Vision Advocacy Summit, Genentech, Inc., San Francisco, CA, April 12, 2006.)

Nouns:

Central vision loss
Condition
Disorder
Disease
Low vision
Visual impairment

Adjectives:

Legally blind (only as a measurement for determining receipt of aid and benefits. See above.)
Partially-sighted
Visually disabled
Visually impaired

Verbs:

Affected [by]
Have

Summary & Recommendation

The kind of wording used to describe macular degeneration and the state of the people who have it can either positively or negatively effect newly diagnosed patients. Correct terminology makes use of words and phrases that are accurate by definition. Terminology that is inaccurate or emotionally inflammatory is counterproductive to proper patient education and potentially harmful to the patient’s wellbeing. Individuals who use such language in public communication are thought of by the AMD community as uneducated at least, unprofessional at most, and certainly disrepectful of those who deal with the daily realities of the disease.

We therefore recommend that only terminology that is accurate by definition, as outlined above, be deemed acceptable by those who are affected by macular degeneration and related diseases that may lead to central vision loss.

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