Trying to Communicate

Thursday, 30 November 2006

As we search for methods and techniques for my dad to communicate, I came across this article posted on the Yahoo! Groups chat room. We must figure out how Dad will communicate and how he wants to communicate while he still has his voice.

THE PERILS OF MUTE COMMUNICATION

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 to 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 was, "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 online at wisebrod.com