Quest's Language Questionnaire (1997, no. 5) gave people something to talk about. Nearly 300 readers completed and returned questionnaires. Many of them expressed strong opinions about which words and phrases are appropriate to use in discussing disability and which are not.

ANSWERS & MORE QUESTIONS

An examination of the survey results shows some definite trends, but also reconfirms a point made in the original article: "Language is one of the most troubling issues in the realm of disability today."

Many respondents wrote comments expressing the difficulty of choosing the right word and raising questions about the mixed meanings of certain terms. There was widespread agreement on very few points, and often those who disliked a term felt just as strongly as those who liked it.

About two dozen of those who answered the survey thought the language issue wasn't important or called the survey an unnecessary exercise in "political correctness" or labeling. At the same time, a similar number shared the view of the woman who wrote, "I'm delighted that you are pursuing the importance of educating people with disabilities and the public about the area of 'people first' language. Good work, MDA!"

Comments from those who thought the survey pointless included: "If an individual with MD is overly sensitive and whining, they can expect a hard existence"..."much to-do about nothing"..."I think the emphasis on language is a detriment to honest exchange of ideas"..."Life is too short to worry about getting all bent out of shape over a word or two."

A typical comment from those who found language important: "Words that elicit a picture of helplessness and total dependence (such as victim, struggling, stricken, exceptional, dystrophic), even if subtle, can offset the efforts of advocates and the advances achieved through legislation."

POINTS OF VIEW

Several comments reflected the way that personal experience gives individuals different perspectives on the impact of language.

A ninth-grader said, "The problem I have found is not with my friends but with adults who think because I'm in a chair I have a thing they can catch."

An architect with a neuromuscular disease observed, "In public meetings it's sometimes more expedient not to deal with the language issue when the intent is positive (i.e., handicapped parking or handicapped restroom)."

The mother of a young man who died of Duchenne muscular dystrophy wrote, "Now that I've lost my bright, intelligent son, a cure is all that really matters."

A 58-year-old man said: "I have been amused over the language problem. People don't understand that what we are looking for is another term -- independence."

A 38-year-old woman said, "When I venture out I have to endure stares and people constantly asking 'How are you?,' 'How have you been doing?,' etc. I'm first a person and my disease is not my most important thing in life."

A mother with a neuromuscular disease wrote, "Being born in 1950 with an MD child born in 1976, I realize the changes in language. My daughter has not suffered the humiliation I have through human ignorance."

SOLUTIONS AND CONCLUSIONS

Having agreed that the problem is complicated, how did readers suggest it be solved?

One participant said media and organizations should emphasize that "MD can happen to anyone. People don't choose it so they must not be discriminated against."

Another commented, "Sometimes I think we shoot ourselves in the foot by trying to have only positive or neutral language. In that we fail to acknowledge the real world."

A 24-year-old woman said, "We need to realize that if we can't agree amongst ourselves, how can we expect them to use appropriate language?"

A 33-year-old man with SMA noted: "Although language is very important and needs to be discussed and debated, eliminating offensive terms is meaningless if we don't change the attitudes that made those terms offensive."

In responding to people who use offensive language, another observed, "Humor and humility invite people to be on our side. So often the activists among us alienate by their hostility and lack of compassion toward others who don't know."

These responses may not lead to any clear conclusions, but they're good food for thought. Here, unscientifically analyzed, are the survey results.

THE RESULTS

1. The first question asked readers to rank each of 37 terms frequently used in reference to a person with a disability on a scale from "object very strongly" to "prefer this term."

Virtually each one of the 37 terms got at least a few votes on every level.

The terms that readers objected to most strongly were:

• crippled (81% of those who marked this term objected to it)
• an MD (79%)
• victim (76%)
• MD case (71%)
• handicapable (68%)
• stricken with muscular dystrophy (67%)
• suffering from muscular dystrophy (67%)

• has muscular dystrophy (86%)
• person with a neuromuscular disease (82%)
• person with a disability (76%)
• affected by muscular dystrophy(70%)
• wheelchair user (66%)
• living with muscular dystrophy(64%)

• impaired (58% objected; 25% accepted or preferred)
• afflicted with muscular dystrophy (56% objected; 32% accepted or preferred)
• wheelchair-bound (55% objected; 25% accepted or preferred)
• confined to a wheelchair (52% objected; 35% accepted or pre ferred)
• physically challenged (40% object ed; 46% accepted or preferred)
• disabled person (28% objected; 61% accepted or preferred)

A few of the objectionable terms that people added to our list were: special, sick, can't do anything, a handicap, invalid or having a genetic disorder. They also objected to being referred to in the third person, being "put" to bed, being told "you don't look very disabled," and people who speak without making themselves easy to see.

Several respondents suggested they'd like to be called by their names rather than any other term. Others would rather say they have a neuromuscular condition than a neuromuscular disease.

Several respondents agreed with the 26-year-old man who called such terms as "differently abled," "exceptional person," "handicapable" and "physically challenged" "euphemisms that sound ridiculous, not to mention somewhat patronizing as well." Another man said such terms "trivialize disability by attempting to put a positive spin on having a disability."

One 58-year-old man objected to terms like "overcoming a disability." He wrote, "I have MD and have accepted that my deterioration is a fact. Others may say I'm overcoming but I'm not overcoming anything."

• no (51%)
• yes (39%)

In order of preference, from most to least preferred:

1. client
2. person served by MDA
3. person with an MDA disease
4. patient
5. registrant
6. consumer
7. MDA person
8. constituent

• only when describing a relation ship with a doctor (45%)
• doesn't bother me (41%)
• only when describing medical treatment or condition (9%)
• never (2%)
• only in case of a terminal illness (0)

A 65-year-old woman with a form of ALS noted, "I would like people to speak to me, not through my husband. Beginning with my good doctors."

Another woman strongly preferred the term "patient": "Always. It is the truth. Every single cell in my body is sick at the genetic level."

• People without disabilities don't know these terms are offensive. (60% of respondents checked this answer)
• They don't have good alternatives for these terms. (44%)
• People with disabilities haven't done a good job of educating the media about more acceptable terminology. (39%)
• These are accurate and acceptable ways to describe living with a disabling disease. (26%)
• They don't care what people with disabilities think. (15%)
• 13% wrote in that the reason was sensationalism or emotional effect.

• If they don't know anyone with a disability, they've never thought about the issue. (83% of respondents checked this answer)
• People don't know these words are offensive. (78%)
• They're uncomfortable around disability. (64%)
• They don't see people with disabilities as complete people. (52%)
• "Crippled" is less offensive than a racist term. (24%)
• These terms reflect their fear of becoming disabled. (20%)
• They're tired of being lectured about language. (17%)

• Simply say, "I prefer to be called....." (45%)
• Politely educate the speaker about "people first" language, no matter who it is. (17%)
• Explain what's wrong with the specific term. (13%)
• Correct the speaker only if it's someone you know well. (9%)
• Say nothing. (8%)
• Various other responses, such as "it depends" or "stare blankly." (9%)

In order of preference, from most to least preferred:

1. Full accessibility to public and private facilities
2. Social interaction between people with disabilities and those without
3. Technology to give people with disabilities more independence
4. More accurate and varied depictions of people with disabilities in the media
5. Finding cures for neuromuscular and other disabling diseases
6. Governmental support for daily living needs and medical care of people with disabilities
7. Educational material from organizations such as MDA
8. Enactment of more legislation against discrimination
9. Emphasis on appropriate language

These are the percentages of respondents who agreed with each statement:

• Language that a child hears regarding his or her disability has a lifelong impact. (87%)
• Appropriate language will develop as people with disabilities participate in more areas of society. (82%)
• Language has a powerful influence on perception and attitude, so teaching respectful terminology is vital to creating acceptance for people with disabilities. (76%)
• I don't care much about language; I care more about finding a cure for my disease. (59%)
• Following the "person first, disability last" rule clears up almost all questions about appropriate language. (57%)
• The emphasis on language harms people with disabilities by making them look overly sensitive. (52%)

• The emphasis on language harms people with disabilities by making them look overly sensitive. (37%)
• I don't care much about language; I care more about finding a cure for my disease. (35%)

Quest and MDA appreciate your enthusiastic response to this survey. If you have ideas for other surveys we could conduct through the magazine, please send your suggestions to the editor.