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Allow Me My Voice

I find it difficult to blog. I have plenty of ideas but executing those gems gets lost in the minutae of operating my Tobii, my augmentative and alternative communication device, which operates with the positioning of my eyes.
One may think that I ought to just be grateful that I live in the computer age and get on with it. But my experience is that if we say nothing, you get nothing. How else do things improve?

I'm an avid, daily user of the technology. I am also told that I'm one of the fastest users that my Tobii representative has ever seen and she covers several states. And, still, I have days when I abdicate and resort to communicating by practically, unintelligible speech, which wears me out and exasperates me.

For one thing, I live in a nursing home situation with many caregivers, not one of them has speech generating device experience nor training. This is ludricrous! As one of many patients with dysarthria, major speech deficits, I believe responsible caregivers should be able to communicate with their patients. They should be able to turn the device on and off, Position the device, set up for calibration, and find the instructions to give aid for more complex needs. For example, reset the device when it acts up.

Can you imagine having to communicate when you need to make a bowel movement, without the use of your words or hand gestures? What about when you need to report new symptoms or adverse reactions to a drug? How do you let it be known that you cannot breathe?!  I've been in all of those situations and I can tell you, you cannot begin to feel helpless and vulnerable! It's like I've regressed back to babyhood in all physical areas, except for my brain.


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Location: 2720 E Madison St, Seattle, WA 98112, USA

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