I recently came across a story that warmed my heart and reminded me of some earlier life experiences that reinforced my conviction that access to an effective communication should be considered a basic human right.
The story comes from CNN and involves a deaf and blind man who was traveling alone across the U.S. on an Alaska Airlines flight. A teenage girl familiar with sign language spent much of the time on that flight helping the man communicate, even carrying on conversations about who he was, where she lived, etc. --- all of this using finger spelling in the palm of his hand. (Think Annie Sullivan and Helen Keller). https://edition.cnn.com/2018/06/23/us/teenager-helps-blind-deaf-man-during-flight/index.html
Personal memory #1:
(About 25 years ago) I was in the kitchen of our condo with a much-loved two-year-old grandson, who was sitting in the high chair and trying to let me know what he wanted. The Cheerios were just fine, but we hit the wall when I started offering something to drink in his sippy cup. I don't remember where I started, but I do remember trying absolutely everything I had available (short of the brandy I may have wished I had for myself at that point!). Water, milk, juices of all kinds - everything met with the same reaction; scrunched up red face, followed by tears and screaming, and of course always pointing toward the refrigerator, which he must have thought had magic powers to produce exactly what his heart was desiring. We both survived the ordeal, and he has grown into a fine adult with a new baby son of his own. Grandma's lesson learned here was that life can be extremely difficult if you don't have a way to make your basic needs known to others.
My thought at the time about my young students: Yes, at times they really DO act like two-year-olds and it might be simply due to a serious inability to communicate. When you don't have a voice, the only way you can express yourself might be through behavior. Let's get at the communication needs, and let's NOT focus on managing the behavior.
Personal Memory #2:
(About 23 years ago) I was at a local family restaurant having breakfast with good friends. As it happened, I had a very bad case of laryngitis and could speak only in a strained whisper. I knew that it could be difficult to be heard, maybe even irritating for others to listen to my voice, so for the most part I remained quiet. But these were good friends, we were having a good time, and it was definitely not easy for me to stay out of the conversation. At one point, I had something I really wanted to say, so I reached into my purse for a pen and some paper. I thought I was being as subtle as possible in doing this, but I noticed that almost immediately everyone else stopped talking and started waiting to hear (or see) what I was writing. There was nothing earth-shattering about my comment and the period of silence seemed to go on forever, until they could all read what I had to say. I did not like being the center of all this attention, and was embarrassed by the experience. I didn't write anything else, and I have never forgotten the incident. Grandma's lesson learned: Alternative communication is often cumbersome, with limited effectiveness.
My thought at the time about my students: If/when they DO find a way to communicate, it almost always involves great effort on their part, and they may be driven back into silence if they sense they are causing an inconvenience to anyone else, or if their words are met with any sort of over-reaction. They get used to being on the fringes of social interactions, with people talking around them and forgetting to include them in some sort of comfortable way.
Personal Memory #3:
(About 13 years ago) I was on a gurney in the ER of a Hollywood (CA) hospital after suffering the first and only full-blown seizure of my life. I was under observation, awaiting some tests, and resting comfortably. There were two other patients at the time, and we were separated only by portable curtains, which allowed everyone to hear whatever was being said. One patient did not speak English, and the other was severely hearing impaired. In both of these cases, the hospital workers were diligently making phone calls seeking assistance. They calmly persisted in their efforts, realizing that the ability to communicate with both of these patients was critical to treating whatever conditions or circumstances had brought them to the ER that day. Grandma's lesson learned: Sometimes we really NEED a way to communicate. It might even be a matter of life or death.
My thought at the time about my students: Oh, if only the powers-that-be in the school system had that same level of realization that communication is critically necessary. At that period in my life I had been tilting against windmills for over ten years, trying to convince various administrators that my students were in fact much more intelligent than any IQ score might indicate; that they didn't need me to teach them academics "at their level" (or worse yet, teach no academics but focus on functional life skills!); that what they really needed was a means of communication that worked for them. Sadly, we had found just that in our use of Facilitated Communication, but could not escape the controversy and skepticism that surrounded its use.
Give them the power of the alphabet, and whatever level of support they need. Then, please do respect and listen to what they have to say.
