By Scott Reddoch
My eye ached and my neck had become so fatigued that I felt I couldn’t type another letter. I had a presentation in a few days and was only on the third paragraph. I know that eye gaze takes time but this was brutal.
A few weeks ago I was doing Q&A with a group of therapists. I was asked what I know now that I wish I knew before about AAC. The questions they asked made me realize that I may have some information that other people might have use for.
So here it is.
Eye Gaze is Not Easy
I have severe vision damage from two strokes a few years ago. Strokes that should have killed me. We are getting better at saving lives, and I am glad that we are. But as a result, I am now non-verbal and quadriplegic. Not only can’t I talk or move, but I don’t see well either.
That has made eye gaze challenging, but I didn’t have many options for communication.
I felt that it was unfortunate that I have had to use a Tobii/Dynavox for my communication over the last few years.
That isn’t a fair statement.
The Tobii Dynavox that I use has been an absolute lifeline for me. I can’t imagine what my world would be like without this technology.
How I Got Started
In my early days, I didn’t think much of AAC. Augmentive and Alternative Communication, for those who don’t know the acronym. I wanted to talk like I used to. However, that wasn’t happening and I slowly began looking at AAC as a critical part of my everyday life.
I didn’t know anything about it, but my nurse knew a little and my speech therapist knew a lot.
Before my introduction to high tech AAC, I was using a letterboard. Letterboard communication is a low tech method I was taught when it was discovered that I had the cognitive abilities to communicate with others, just no speaking ability.
I was happy to finally let people know what I was thinking. Using the letterboard greatly improved my care and I could tell doctors about what was working. It was great to be communicating again but there had to be a better way.
The letterboard is extremely slow and requires a partner to perform. Being able to communicate, and even share my thoughts with others who want to hear them, has been very important.
I tried a few different types of camera configurations. I tried this device that uses trace movement, but I didn’t really have any that I could control. I settled on an eye gaze computer that has built in cameras.
I should mention here that I was able to try all of this out while I was at Touro Hospital. Not only did I learn about these devices, but my speech language pathologist Maggie Homer knew what could help me. That made all the difference. She understood the importance of me being able to express myself. I didn’t know this, but my SLP was training me with this alternative communication device because it had the best chance of getting me some quality of life.
It was so difficult to control that I had thought eye gaze wasn’t for me.
But I was determined to make it work.
The Reality of Eye Gaze
I don’t have a story of instant success or even a story about slow and steady progress. My experience with AAC is that the gains came in anticlimactic spurts, with long periods of no progress and self doubt in between.
About 100 words would take an eternity to type. At that time, more than that would give me blurred vision and the most severe eye strain that I had ever experienced. This happened to me several times. This is what building eye strength actually feels like.
With eye gaze, you will feel like you are visually running a marathon. The pain and fatigue say quit, but you have to keep pushing.
Eye gaze requires a lot of strength, patience, and clarity. Also, most programs on the Internet are not built with access for paralyzed people in mind. In order to get proficient at it, you are going to have to build eye strength and develop a new skill that is unlike anything you have ever seen before.
Strength is part of it. But strength alone won’t do it. Like most things, you have to build the skill over time. Nobody is good at first.
Running the eye gaze is like threading a needle. Most things seem counterintuitive. You don’t put the cursor on the places you want to select. You have to stare at the spots you want to select and the cursor will come to where you are staring.
Eye gaze is very sensitive. It detects the slightest movement, so you must have an intentional, undistracted gaze.
What I Learned About Eye Health
One of the first things that helped me was taking eye health seriously. This is especially important because eye gaze is so challenging, you need every advantage you can get.
I maintained a good relationship with my optometrist. I went through two eyeglass prescriptions looking for the perfect one. As I write this, I am thinking about changing it again.
Start treating your vision as the precious ability that it is. Eye-gaze will make you hone your skill like an Olympic athlete.
There will be lots of eye strain and it is going to hurt.
Back when I was trying to control eye gaze with two eyes, before I wore a patch over my bad eye, I had wrecked my eyes to the point that they were bloodshot for a week and I had to take a break for a while. That was a low point. But it taught me something important about pacing myself and protecting my vision.
What Actually Works
Through all the frustration and failed attempts, I did find a few things that bring better success.
You have to control your breathing, both inhale and exhale. Breathing gets overlooked but it plays a big part. Breathing is critical in vision. Not breathing enough will starve your eyes of oxygen. Breathing too much will have you moving, and movement is the enemy of eye gaze control.
There is a phrase that fits well here. “Aim small, miss small.” When using eye gaze, pick a specific detail or letter of what you are trying to click. If you aim small, you will reduce the amount of time that it takes to focus on a specific target. If you find the cursor bouncing around and it taking a long time to get on target, try adjusting your aim.
These aren’t just tips I read somewhere. These are things I learned the hard way, through hours of eye strain and frustration.
Where I Am Now
I am way better at eye gaze now than when I started three years ago. Be patient with yourself and be intentional with this.
It takes work, but will open up a whole world for you to explore.
There was a period when I isolated myself from the world. I couldn’t physically do much and I was medically unable to even go outside for a while.
Beyond the fact that with hi-tech AAC allows you to communicate, with Internet access, the digital landscape brings countless opportunity.
I have found an entire community there. I discovered disabled groups where my voice matters as much as anyone’s. I no longer need to leave my home to explore new places or make new friends. You can go practically anywhere and learn about almost anything.
The technology available has really leveled the playing field for me. The possibilities are almost endless.
I did finish the presentation that I mentioned earlier. That one was painful, most of them are. Many people cannot grasp the physical struggle associated with AAC.
That’s eye gaze. It’s brutal and it’s slow and it will test your patience.
But it gives you your voice back.
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