Thursday, June 30, 2011

Language is Power

A friend  proudly posted on her facebook wall about her son’s first word.  He said “bye bye.” They tested him several times to see if he would do it again and indeed he did. That is a momentous thing. It is the start of one exercising control over what happens to them. There is a reason so many toddlers are adept at the word “NO!” They finally have a say in what they do, eat, wear, etc, because language is power.

We learn to talk and we learn to listen. We learn through language eventually figuring out how to read and write, thus conveying language in additional forms. Language is the basis of all our interaction with one another and it comes in all forms.  I cannot even guess how many spoken languages there are (or were); and yet many of us are limited to just one. The deaf, who cannot hear spoken language, learned to communicate through sign, which is one of the few international languages.

Language is just one of those things you take for granted, at least until you cannot understand someone.  Of all the disabilities and medical problems Maggie has, her inability to speak is the most difficult for me. If I could magically fix it all I would do so, but if the magic extended to fix only one thing, it would be language. She might have a different opinion on this matter, but she can’t tell me what it is, so I don’t  know.  And that’s the problem.

Before she had the trach, Maggie did say an occasional word. Her favorite was “mama” and she would say that in various tones and at various decibels to convey what she wanted. She would call me, chastise me, greet me, correct me and laugh at me all with one word.  It was hilarious. The tracheostomy tube silenced that along with her joyful laugh. I miss both terribly.  But it could not keep her from communicating

Language is just one form of communication, though, and Maggie can communicate even if she cannot speak. Communication is necessarily a two way street, it requires  a sender and a receiver.  If there’s no one to receive what you are saying, there is no communication.  Maggie is an excellent receiver. She understands everything. Everything.  In fact, if she gets any better at “speaking” I may be in serious trouble. She knows all my secrets.

Maggie does “speak” somewhat. I’ve written at length about her amazing abilities with her dynavox. She is getting more and more adept at using that every day. It is not a perfect set up, but it is a wondrous thing. The machine itself presents some limitations  and Maggie’s  ability to utilize the incredible things it does have to offer limits her even more.  The biggest limitation to it, though, is that others don’t really accept it as actual communication yet. Those who recognize the machine are amazed at her abilities, but don’t really “listen” to what Maggie has to say. The technology is still off putting for many. That will change over time as more and more people get access to this technology, but for now it is another  roadblock to capturing all the power that language has to offer. The technology  is unbelievable and it has provided Maggie  with some of the power of language.  The taste of that power, limited though it may be for Maggie, just makes her hungry for more.

I can only imagine what Maggie would have to say if she could tell me what she is thinking. Think about it. She's 17 and I have been her mouthpiece her entire life. There is an outside chance I have read her wrong once or twice. If she could call me on a lifetime of errors, I might just get an earful. 

If only.


  1. I long to know what Sophie is thinking because her eyes are so expressive. We haven't had much luck with AAC -- even the iPad is a bit of a slog. I so want to empower Sophie through language but wonder if I should content myself with the way she communicates now --

  2. Hi Sally, You bring up a good point about people being interested in the device but not actually 'listening' to what is being said because it takes patience and time. Everything moves so fast nowadays, it's hard for people to take the time to even eat! I think about how frustrating it must be for Maggie too given that she does understand everything yet, it requires so much energy to say what she wants to say. Interesting too is the intuitive aspect of understanding what she wants to say without words, which also takes time to learn. By the by, somebody just viewed your blog from Carbondale, CO which is 10 miles from where I live. Weird!


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