Do It Myself Blog – Glenda Watson Hyatt

A couple of years ago I challenged the “functionally non-verbal” label placed upon me by medical experts by giving my first ever speech. Since then I have given a few more presentations. My head still bobs for invisible apples, but, for the most part, I have accepted it as another quirk of my cerebral palsy. Some people become a red lobster when they speak publicly; I become a head bobble.

Up until now the content has been prepared ahead of time, so giving my presentation meant hitting a few buttons on my laptop. This weekend I was at a strategic planning session as a Board member for the Social Planning and Research Council for British Columbia (SPARC BC) and had the opportunity to take the next step with my public verbalizing.

For the first exercise, the facilitator had each of us share our top short-term priorities for the organization. Thankfully he wanted us to succinctly phrase our idea in five words, and, thankfully, he started at the other side of the table. Using my new roll-up keyboard plugged into my small Toshiba Libretto, I was able to plunk out my five words by the time it was my turn. Taking a deep breath because I hadn’t used this particular software live before (what NOT to do!), I hit the “speak” button in the NextUp Talker trial version and my words were shared with the group.

We went around the table again and again; each time I was able to keep up and offer my thoughts. Had the group been smaller or had the facilitator wanted a detailed explanation, I may not have been able to type my thoughts fast enough. Thanks to the technology, this was the first time in my life that I was able to offer my own thoughts in this kind of group setting. I did not have to pass this time like I had done every other time, even though ideas and thoughts were no doubt zinging around my head.

But, because this was the first time, I found myself self-censoring a lot. Was that idea good enough? Was that really what the facilitator was looking for? Maybe it was too general or too specific? It is one thing to have the technology to be able to communicate in this fashion, but having the confidence that one’s ideas are good enough to share with a group is something else; something that takes as much practice as learning the technology, something that I’m not sure is realized when individuals are taught how to use augmentative communication devices.

The second exercise was to discuss specific topics in small groups. Once again I was able to contribute a few thoughts in an abbreviated format; I would have liked to offer more expanded thoughts, but it was more than I had been able to offer in the past. It was definitely a step forward.

However, with the small group, timing was much more of a factor. By the time I plunked a response to a thought someone had put forth a moment ago, the rest of the group was already ten thoughts ahead, so my contribution felt rather disjointed and out of sync.

Through this journey of coming out of the silence, I’m seeing how verbal communication is really situation-dependent and there are subtle differences that many people may not even realize. But, going from the written word to the spoken word, I am picking up on these differences and am still figuring out how to mold the technology to fit the situation.

One addition to the technology that would help somewhat is to have the word prediction/completion feature of EZ Keys software that I have on my desktop computer. This feature saves me a bit of typing, and hence, slightly speeds up my output. This means I may be able to type a longer response per contribution.

To have EZ Keys work on my laptop, I would need to move the softkey – the hardware that enables the software to work – from my desktop to my laptop each time I head out with my laptop; a hassle but doable. Another option is to buy another EZ Keys license with the softkey for $695US to use on my laptop in conjunction with NextUp Talker, which is $100US. Alternatively, EZ Keys also has a text-to-speech feature, which I didn’t purchase the first time around because I didn’t envision doing what I am doing now. The complete EZ Keys package with voice is $1395US. I understand this is a business and I definitely don’t want charity, but I feel my voice is being held hostage for a ransom I cannot afford at the moment.

With my husband’s support and insistence that I have the tools that I need, we have purchased the laptop, the speakers, and the roll-up keyboard. Now I need another piece? It’s frustrating that I need something so cumbersome and expensive in order to do what most people take for granted: communicate verbally.

But, I know Darrell and I will find a solution because that is what we are good at. And, in time, I will be giving presentations complete with Q&A sessions, even though my responses may not be as well-thought out or elaborate as they would be had I been using my comfy written word.