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Choosing Words Carefully
Written By Dov Wisebrod
Like characters on the original Star Trek and, more recently, South Park, I often communicate only by indicating "Yes" or "No."
I have Lou Gehrig's disease (amyotrophic lateral sclerosis or ALS), a disability in which motor neurons die, muscles atrophy and complete paralysis ultimately occurs. I have had ALS for more than 12 years, and I rely on machines and tubes for eating and breathing. ALS rarely affects higher brain function, so although I can't move my limbs or speak, I can still be creative and manage my own care, as long as I have a way to communicate.
Communication is exceptionally difficult, yet essential, for people like me.
Maintaining the ability to have a conversation and interact socially is vital to quality of life as my body deteriorates. There are a wide variety of means for alternative and augmentative communication (AAC), including technical devices (like Stephen Hawking's computer) and non-technical methods (like following a person's gaze on an alphabet board). I use one of each type of AAC to communicate.
I operate my computer using a single sensor taped to my toe. When I bend my toe, a signal is sent to accessibility software that I created, and my software allows me to operate my computer. I can communicate reasonably well by typing slowly and having the computer speak what I type.
But there are times when my computer is inaccessible -- for instance, when I wake in the morning, when I am in a hospital or when the computer inevitably crashes.
Without my software, I resort to facial expressions that signify "Yes" (raised eyebrows) and "No" (eyes, mouth or head moving slightly side to side).
I can spell words, letter by letter, by answering "Yes" when the letter is spoken by another person. I don't use an alphabet board because I often need to communicate at night when my eyes are closed; I can still communicate with my eyebrows but not with my gaze on an alphabet board. Instead, I memorized a simple letter grid in which the alphabet is divided into five numbered rows, with each row starting with a vowel:
1 - A - B - C - D
2 - E - F - G - H
3 - I - J - K - L - M - N
4 - O - P - Q - R - S - T
5 - U - V - W - X - Y - Z
The person to whom I'm "talking" slowly counts, "1 2 3 4 5, 1 2 3 ... " until I say "Yes," by raising my eyebrows, to select one of the five rows. The person then recites the letters on the row I selected until I raise my eyebrows to select a letter. By repeating this process, I can spell words and sentences.
Whether I use my computer or my eyebrows, these restrictive, tedious and slow communication methods are frustrating and present unique challenges for me and the people I talk to.
First, without my computer, I can only answer questions to which "Yes" and "No" are the only possible answers. I can't answer multiple choice questions. "Do you want water?" is good. "Do you want food or water or anything else?" will be answered with my expressionless face. When I do answer, the questioner must repeat my answer, and I will respond "Yes" if it is correct, to confirm that my slightest facial expression isn't misinterpreted.
I also have a problem answering questions posed in the negative, as in, "Don't you want water?" If I do want water, the syntactically correct answer is "No," but many people expect "Yes," as if the question were, "Do you want water?" (Actually, I've found that people whose second language is English expect "No," and native English speakers expect "Yes.") Again, I must remain expressionless or patiently and methodically spell, "No negative questions."
Helpful people sometimes attempt to speed up communication in several ways that almost always fail. One, asking many questions too quickly, so by the time I can answer, my answer to the first question is misinterpreted as my answer to the second or third question. Two, asking questions with implied answers and not waiting for me to answer, such as, "You need water, right?"
Three, assuming they know the word or concept I'm typing or spelling and not waiting for me to finish. For example, assuming the letters "sl" will be the word "slow" and not sleep, sleeve or slide.
I choose my words carefully and with curt efficiency to convey the most meaning with the least effort. This is crucial when I have an urgent need, but it also minimizes the time and frustration of communicating. When possible, I use short synonyms instead of longer alternatives, so that "strange" and "weird" become "odd." Also, I use American spellings to avoid the extra "u" ("color" instead of "colour"). I don't have the luxury of using "please" and other pleasantries. I trust the listener to recognize that my brevity is not impolite but just efficient.
Sometimes, however, I need to be verbose to be understood. When I have a conversation with more than one person, the others often proceed faster than I can type and speak my contribution to the discussion. I need to include in my comment a reference to the topic that the others have passed and hope they recall the context to which I'm referring.
If I want to inject tone into my speech, such as sarcasm or optimism, I need to be abundantly clear or exaggerate. Even people who know me well can misunderstand and take my words at face value or, worse, interpret what they are predisposed to. In the right context, on the other hand, humour is relatively easy. During my latest hospital visit, I waited in agony in triage while I watched several gunshot trauma victims pass me and receive priority treatment. I spelled, "Shoot me."
- Dov is on-line at wisebrod.com.