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I have become very aware of the words that we use to speak of people with disabilities. In the U. S., there is an effort made to use what is called "person-first" language, meaning that when we speak of people, we speak first of the person, then of the disability. For instance, we would say "a person with autism" rather than "an autistic person" or "a child with mental retardation" rather than "a mentally retarded child." This language has been stressed in our laws (much of it has been an outgrowth of the Individuals with Disabilities Education Act, IDEA) and in our writing (the Publication Manual of the American Psychological Association, 5th Edition, emphasizes using bias-free language), and many journals have adopted policies by which this language is required for publications.

I emphasize this to students in my teaching. There are ways, also, in which we make an effort not to label people as "suffering" from a problem (a person does not "suffer from Alzheimer's disease" but rather "has Alzheimer's disease") or as being a "victim" when they have had a problem (a person is not a "victim" of a stroke, he or she may have "had a stroke"). This is part of not assuming that a disability is also a handicapwe have learned to use the term "disability" rather than "handicap" in recognition that people may have a disability, but whether or not it leads to a handicap is more individual.

Sometimes my students wonder if I am the only person who has learned that this is a more sensitive way to speak, because many people in the U. S. do not yet use words in this way. I can only explain this as a lack of awareness because it is a national discussion, not just in my state or region. I also have the impression that people recognize these principles in other parts of the world, although it is not clear always from the terminology that is used. (Of course, I know that people from other countries are often translating things to English so may not be using the exact words that they would use if they were speaking in their first languages.)

Alice-Ann Darrow and Glen White (1998) shared "Basic Principles for Communicating About Persons with Disabilities" in an article a number of years ago, and I quote these below:

1. Avoid the article "The" when referring to individuals with a specific disability, such as "The blind" or "The disabled." Grouping all individuals together into a disability category promotes objectification and the idea that all of these individuals have common attributes.
2. Avoid terms which have negative connotations such as, "afflicted with," "suffers from," "is a victim of," "is confined to...." These terms promote negative stereotypes.
3. Avoid using terms that turn the disability into a personal noun such as spastic, epileptic, amputee, mongoloid, paraplegic, or quadriplegic. The preferred terms are "a person with a prosthetic arm," "person with Down Syndrome," or "a person who has epilepsy," and so forth.
4. Avoid comparisons between a person with disability and person without a disability. For example, "His near normal speech allowed him to communicate...," or "She held her own while interacting with normal children."
5. Avoid sensationalizing or patronizing the individual with a disability. For example, "She dances well for a person with a prosthetic leg," or "You would never know he was blind."
6. Don't refer to the disability at all unless it is necessary. Itzhak Perlman once said he would like, for once, to read a review of his performance that did not mention his disability, especially since it in no way affected his ability to perform.
7. Avoid self projection. For example, "I would rather die than be blind," or "I really admire you, because I don't know what I would do if I couldn't walk anymore."
8. Avoid accolades which devalue, such as describing the person with a disability as brave or courageous.
9. Avoid references which indicate an inferior status, such as "He can't talk on the phone because he is deaf." Instead, use a more positive reference such as, "He can communicate with you through the relay service for the deaf."
10. Avoid terms or references that indicate pity, even for individuals who may have recently acquired a disability. Pity references are those such as, "What a shame (what a pity, how awful) that he is losing his sight," or more subtle, "Unfortunately, he was unable to read the lyrics for himself."
11. The final and most important principle regarding terminology is, when in doubt, as the subject matter expert, the person with a disability.
12. Avoid disability references ("Subjects were blind to the purpose of the study") when other references are applicable ("Subjects were naïve as to the purpose of the study"). (pp. 82-83)

I have had some experiences that have prompted me to reflect on some of these issues from a personal perspective and would like to share them. I am basically a healthy person, so any disabilities that I have had are temporary, and I do not want to suggest that I can actually experience them as I would if they were permanent. But they have provided some insights for me that I would like to share.

One occurred a few years ago when I had had knee surgery. For a while, I was walking using a crutch and was not able to move very quickly. At that time, I learned how quickly some elevator doors close. I would be waiting for an elevator (perhaps where there were three possibilities of the elevator that would arrive, and I did not know which one would arrive for me). When the elevator door would open, I would rush to get in the elevatorbut it would have already closed by the time that I arrived. At that time, I became aware not only of how relatively quickly these doors can close, but was also very grateful to people who would hold the door for me or clear the way to make it possible for me to get to the elevator. Of course, this had nothing to do with language but did give me some insight into what someone with a physical disability might experience.

One thing that I have discovered on several occasions when my knee or foot has hurt is how far things can be from where I am able to park. (I say this and I live in the U. S. where I know that we do not walk a lotI am sure that the situation would be more difficult in many other countries.) It becomes a major task to return a book to the library or to attend a meeting across campus when I am in pain. At these times, I appreciate the extra effort that people with who have difficulties or pain walking go through to do the same things that I normally do without thinking, and I realize how my lifestyle would need to change if I dealt with this type of pain on a regular basis.

A few years ago, I was diagnosed with a medical condition that requires me to take blood thinner (Coumadin). Since I take this medication, my blood needs to be checked regularly to be sure that it is at the right level. I gather that it is usually people who are much older than I am who use this medication and thus take this particular blood test regularly. When I first started to take it, I was amazed at how the medical assistant with whom I dealt would speak to me and offer to help me. All of a sudden, it was as though I couldn't make decisions for myself or needed help with even simple tasks like carrying my purse! I didn't respond very well to being treated like thisat one point, I confronted her, saying that there was no reason to be speaking to me that wayand I do not experience this anymore. But that initial time of having this particular "disability" did give me insights into how it must feel when people no longer feel that you are capable of making decisions or doing things for yourself.

This brings me back to the language that we use. Even though we might think that they are just words, the words convey feelings and affect how people experience our feelings about them. When we label someone as their disability rather than as having a disability, we convey something to them. Some of these are the kinds of things that I have experienced in my brief and minor bouts with these problems. I know that music therapists do not intend to convey any of this, but think that it can be helpful for us to become more aware of these issues of language and how they may influence what we convey.

References

American Psychological Association. (2001). Publication Manual of the American Psychological Association (5th Ed.). Washington, DC: Author.

Darrow, Alice-Ann, & White, Glen W. (1998). Sticks and stones... and words CAN hurt: Eliminating handicapping language. Music Therapy Perspectives, 16, 81-83.

How to cite this page

Wheeler, Barbara (2005). Our Language and Our Attitudes. Voices Resources. Retrieved January 15, 2015, from http://testvoices.uib.no/community/?q=fortnightly-columns/2005-our-language-and-our-attitudes