Whose Voice Is It Anyway

Whose voice is it, anyway? (1994)

Having joined the mainstream of humanity after sixteen years I know the value of communication too well to pretend that I can be objective about it.
Anne using Board
Here I am at the age of sixteen using the alphabet board with which I gained my freedom. 
Now I still communicate by spelling on an alphabet board, on which I can reach a top speed of 400 words an hour (speakers utter about 150 words a minute).
After I left St. Nicholas Hospital in 1979 I bought a computer which I tried to use with a switch and later used with a headpointer. The computer was always the slowest of all my high-tech communication equipment, all of which was much slower than using my alphabet board. I could type at ten words an hour, provided someone else set up the computer (I can’t put a disk in the slot, let alone load a printer).
In the early eighties I owned a Canon Communicator - a mini-typewriter which I used with a headpointer and which printed my message on a long thin strip of paper.
Later I got a speech synthesizer which strung together the phonemes I selected with my headpointer to make words and sentences.
The gadgets enabled me to do things I couldn’t do without them, but they didn’t let me do them fast enough to make it worthwhile. If using a computer meant I wrote less and had less personal contact then it wasn’t worthwhile. I don't like using a machine if there's a person available to help me. I can live a good life without any technology other than a wheelchair.
I think that many people with severe communication disabilities use communication technology either because they've been brainwashed into thinking that typing ten words an hour is what life with a disability is all about or because they can't find anyone at all to take dictation and have no alternative. Yes, I want to be able to type independently, but if I can't get up to 400 words an hour it's not worthwhile setting up the equipment. I have so little output for my efforts at the best of times that the thought of diminishing it further simply in order to be independent has no attractions for me.
Today I am not speaking in my voice, but I am speaking my words. The message, not the medium, is what matters for people who cannot use their own voices. Cutting out a dress requires scissors and material, but the pattern is the important part. Words are my material, and I provide the pattern. The alphabet board is the scissors with which I cut out the pattern. Someone else turns my design into speech.
While the scissors aren’t as important as the pattern, their sharpness will determine how quickly and accurately the dress is cut. I have a pair of scissors I prefer - my old ABC board and my new Macaw - together they give me speed and speech. One I use with facilitation and one I use without. How I use them is less important than what I can make them do. With an alphabet board I can say anything I like, but very slowly. With the Macaw I can say predictable things like ‘Hello, how are you?’ quite quickly, and I can make jokes ("Oh drat, I washed my body today and I can’t do a thing with it") but I can’t reply to unpredictable questions. 
Because my scissors are so important I have to choose the ones which do the job best. It has to be my choice, because I’m the one who uses the scissors and I’m the one who wears the finished dress. If I have to use tools which don’t do the job I end up with a dress that doesn’t fit.
People who can talk have built-in voices. People who can’t have add-ons. Nonetheless the add-on voice is part of the person. It has to fit, and the only person who can say if it suits is the user. After the ball I put my voice in a corner, but it is mine far more than the clothes I wear or the chair I sit in. It contains my identity.
Without it I am a tin man - I am heartless, a body with no way of sharing thoughts or emotions. My voice is me. Take it from me and you leave a handful of dust. 
I have a voice - hear me.
Anne McDonald
May, 1994


Anne Board .png730.31 KB
Anne McDonald Centre. 538 Dandenong Road, Caulfield 3162 Victoria, Australia Ph: 03 9509 6324, Fax: 03 9509 6321
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