Friday, July 14, 2006


First of all, what is 'the Board? 'Physically, it is a 12" by 12" piece of Plexiglas with all 26 letters and all 10 digits stenciled on it. The translator then holds it up between us so I can see all the letters. I stare at the group of letters that contains the one I want. The translator calls them out until I hear the one I want, at which point I nod. In this way we slowly spell what I want to say. It is very slow. Before I could nod, I blinked, which was even slower.

While on the one hand the Board keeps me from being a vegetable, it is also very tedious and drives everyone, including me, crazy. It is not easy to use for the translator. My part is also painstaking and difficult, although I am used to it.
The worst part about it is I never appear any smarter than the person using it. If they add, drop or misconstrue a word, they never remember doing it and blame ME when it doesn't make sense, even though it was THEIR fault. I can't explain what happened; they never get THAT explaination right, either. Basically, when I have no choice but to try to communicate with someone who is no good at the Board, I stick to single, short words when I talk at all. Communication at a higher level is impossible. Thus, when I am left alone with strangers they treat me like a vegetable. For this reason I am pretty dependent on my family.

When first using a Board, there are several tricks. First, make sure yes and no are clearly understood. Next work out a way to signal 'end of word'- this eliminates a LOT of problems. Work out a signal for 'I don't know'- which is often the case in a yes/no question. Focus on timing - nothing is harder to correct than a mistake. Work out a way to say 'start over'- for when things get all tangled up or you change your mind about what to say. Another handy sign is to indicate when you didn't hear the question - there's nothing like someone mumbling a question you don't understand, and then demanding an answer, to make you look mentally challenged. They have no way of knowing you just couldn't hear the question. Another thing that makes you look bad is when you try to say something, buy no one wants to take the time to use the Board. Those same people get mad AT YOU later when they figure out their lives could have been made easier if you had spoken up. They forget that you tried but nobody would use the Board. Finally, make about ten Boards so you can always find one.

One of the most insidious aspects of the Board is the way it changes your perceived personality. People don't want to spell out 'please' and 'thank you' constantly, so you learn to omit them. This gives you the appearance of ungratefully barking out orders all of the time. People also get tired of using the Board, so little niceties often go unsaid, leading people to think of you differently. You have to choose words very carefully because people often misconstrue them. They also stop when they think they get it. For example, when you want to say, "I want to go outside to see how cold it is," they might stop after "I want to go out," drop the Board, and say, "No, it is too cold." Never mind what I think.

Another common mistake is adding or dropping a letter or word and completely changing what I am saying. An example might be dropping the "let's" from "let's go outside" - the person might then just drop the Board and leave - very frustrating. The ultimate insult occurs when someone is watching TV or is otherwise interrupted when I am in the middle of painfully spelling out something. The listener often just puts down the Board to pay attention to the other conversation. The effect is to tell me (although it is not their conscious intention) "Shut up. This other thing is more important." People didn't used to tell me to shut up often - it takes some getting used to.

Some people are intimated by the Board - they think it is an IQ test and are afraid they will look stupid. the truth is that some people are good at it and some are not. If you have a normal IQ you MIGHT be good at the Board, although if you have a low IQ you don't stand a chance. I have had complete strangers get fascinated with the Board and just pick it up and start conversing with me, no problem. Other people never catch on.

I am often misunderstood because of the way questions are asked. At first, people forget I can only answer yes/no questions. Then they ask double questions, like "Do you want more or not?". No matter how you answer you might be misunderstood. Another common problem is when they INSIST on a yes/no answer. For example, they might say, "Do you want more food, yes or no?" The answer might be "Yes, if you put it between my teeth. Otherwise no." Unless they are willing to use the Board, they misunderstand - often yes or no isn't enough.

One thing the Board is no good at is yelling. It is hard to express any emotion when you are slowly spelling out words it is hard to convey a sense of urgency. And you are lucky to say something once if people don't like what you are saying and think you are repeating it, they just put down the Board, effectively telling you to shut up, something that only gets you madder. Unfortunately there is nothing you can do about it - if you show signs of being upset they just leave the room. To them, it is probably just a normal reaction when they hear something they don't like, but it hits pretty hard- they might as well tell you to shut up and go sit in a corner. After a while you realize that arguing is pointless, so you tend to get more passive with time.

I got a partially reprieve from the Board after a class reunion. A classmate, Allyson Campa, wrote about me afterwards. A guy from another class saw it and emailled me that he could help. He was VP-Marketing for a speech device company. They had a device for people like me that operated without my wife's continuous help. It was much better than the technology I had seen four years ago. Although the Board, because my wife is so good, is often as fast, the independence of this thing is great. I can even tell people to be quiet now, And no one can edit what I say, much to their chagrin. Most importantly, it is tough and simple, so any caregiver can set it up. With it, I am always free to convey my thoughts.

Another technology which works very well for me is email, because even though it may take me and my family hours to write, to the reader it looks like any other text. There are a lot of nuances to using email as your primary form of communication, however. For starters, I can only email people who give me their email, and can only have conversation with people if they answer back. Only about ten percent of emails get answered. To normal people this is not a problem, if it is urgent they just pick up the phone. To me, however, it feels like, "Shut up - I don't care if it is important - I will decide if I feel like answering." Another disadvantage is anger - write an angry email and the other personnel is not likely to answer, depriving me of the satisfaction of even having a good argument. Email also deprives the listener of any non-written feedback. I can never look at someone's face and judge their reaction, or if they even took my email the right way. Email elongates time dramatically. A simple question and awnswer may take days, a whole conversation weeks while your wait for responses. It is kind of like trying to have a back and forth conversation with someone in another city via regular mail. It takes forever. it is often my only choice


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