Can We Talk?

I was born with cerebral palsy 39 years ago. I’m unable to walk, and neither can I feed, toilet, nor dress myself. But the most difficult aspect of my disability is my inability to speak. My throat and mouth muscles tighten up whenever I try to talk -- they simply won’t cooperate with me. Still, where there’s a will there’s a way, I suppose, and I just wasn’t meant to be kept quiet!

I say I’m unable to speak, but that’s not exactly true: I can say the odd word or phrase. Unfortunately, only the closest people to me know what I’m saying. Everybody else thinks I’m speaking in tongues.

As a child, I wanted desperately to find a better way to communicate with my family and friends. Before I learned how to read, I used hand gestures to try to convey to them what I wanted or how I felt. It was like playing charades 24 hours a day, and this form of communication was, to say the least, extremely.

When I learned how to read at the age of seven, one of my teachers had the bright idea of giving me a "speech card," a piece of cardboard with the alphabet printed on it. I could point to the letters and spell out words and sentences.

Although this was an improvement, there was one small drawback. Although I wanted to be like my older brother and parents and use big, important words, I often misspelled them. Determined to communicate well, however, I gradually improved my spelling.

Great lovers of books and word games, my family had no trouble communicating with me with the speech card. My friends learned how to communicate with me this way, too. Some of them became very adept at figuring out what I was trying to say, while others stumbled over words, forgetting what letters I pointed to and in which order. I learned to be patient with people, to spell out the same words over and over for them, and to rephrase what I was trying to say if they just couldn’t grasp what I was spelling out.

It was strangers with whom I had the most trouble. Whenever I went out shopping, a salesperson would usually come up to me and ask what I wanted -- could they help me in any way? When I would signal to them that I wanted to spell out words on my speech card, they would give me blank stares, or call another salesperson over to help them figure me out. As if I was hard of hearing or not quite right in the mind, they would discuss between them how terrible it was that I was alone, that nobody was taking care of me. Was I lost? What was wrong with me? Feeling rather frustrated and humiliated by this, I would usually give up and leave the store.

As a young woman, I yearned to be more independent. I wanted to do my own banking, go shopping by myself, travel on the parallel transit system on my own, and live independently in a supported-living apartment. I wanted to lead a "normal" life.

To do this, I felt I needed a different method of communication. I’d seen British physicist Stephen Hawking on TV with his speech synthesizer, and I longed to get one for myself.

I went to Toronto’s Bloorview MacMillan Centre and asked them if they could help me with my quest. Unfortunately, they told me I was too old for their Augmentative Communication Service (ACS) program. They suggested I buy a child’s toy called a Speak & Spell and use it as a communication aid. The toy didn’t say the words, they told me, but it had a screen that held eight characters at a time, so people could see what I was spelling out to them. As it was better than nothing, I gave it a try.

There were several advantages to using the Speak & Spell. For one thing, people could now read on the screen what I was spelling out instead of trying to figure it out in their heads. This made it much easier for me to interact with people who were unfamiliar with me and my methods of communication.

There were, unfortunately, a few drawbacks to the Speak & Spell as well. It ran on four C-cell batteries, which would die on me at the most inconvenient times. And because I used the Speak & Spell so much, the keys developed a tendency to suddenly pop off, which made it difficult to type. (Later on, the makers of Speak & Spell manufactured a model with a flat keyboard. I purchased one of these as well, and liked it better.) A year later, the Bloorview MacMillan Centre contacted me and told me that they’d lifted the age limit from their program -- was I still interested in getting a speech synthesizer? I gave them an emphatic, "YES!"

Since then, I’ve had two speech synthesizers, both of which were acquired with the assistance of the Bloorview MacMillan Centre and funding from Ontario March of Dimes. The first was a Toshiba laptop. It allowed me to program whole sentences into macro functions, so that I could recall them with only a few keystrokes. As I entered my messages, a "prediction list" would pop up onto the screen with an assortment of words I might want to use, and I only had to press a single number to choose the right one. These features saved me a lot of time and energy because I didn’t have to type every word and sentence myself.

But there were drawbacks to using a laptop as a communication device. It had to be anchored to my tray with several straps and pieces of Velcro, and if whoever helped me didn’t get it just right, there was always the risk of the whole thing toppling onto the floor.

The screen was also a problem. It was held in an upright position, but the Velcro never seemed strong enough and often allowed the screen to flop forward, making it difficult to access the keyboard. Also, because the screen had a liquid crystal display (LCD), I could never see what I was typing if I happened to be in the sunlight and this made for a lot of spelling mistakes.

I currently use a Phonic Ear speech synthesizer. Although it doesn’t have prediction lists like the Toshiba laptop, it’s far more compact and durable. Like the laptop, with the Phonic Ear I can program phrases and sentences into macros and recall them with only a few keystrokes. A better tray-like device was designed as well for carrying the speech synthesizer around with me. No longer do I have to worry about my speech synthesizer crashing onto the floor!

Unfortunately, the Phonic Ear doesn’t have a large screen like the laptop. It only holds 20 characters at a time. Plus, there is still the problem of the LCD screen if I’m outside in the sunlight.

I have also found the Phonic Ear to break down frequently at the most inconvenient times! I was at a conference in London recently, and I’d programmed my speech into the Phonic Ear. Just before it was my turn to speak, the Phonic Ear decided to die on me. I had to find someone to read my speech for me very quickly.

One problem most speech synthesizers share is that they pronounce some words wrong. If I type "buses" with my Phonic Ear, it always pronounces it "bisses." If I use the alternate spelling, adding an extra S ("b-u-s-s-e-s"), it pronounces it correctly. Sometimes I must purposely misspell words so that the Phonic Ear will pronounce them properly!

The mispronouncement of certain words and phrases has landed me into a lot of trouble over the years. Last month at the grocery store, for instance, I had several packages of meat in my lap and I wanted someone to help me put them into the bag on the back of my wheelchair. I caught the eye of an elderly gentleman and spelled out to him on my speech synthesizer, "Can you please put these things into my bag for me?"

Somehow he thought I wanted to be lifted further back into my wheelchair. I shook my head adamantly, signalling to him that this was not what I wanted. He didn’t understand this, however, and kept trying to grab me under the arms and lift me upwards. A crowd soon formed around us and some people joined in to help the elderly gentleman. Finally, I broke free of their grasping hands and repeated my message. Fortunately, a perceptive person in the crowd understood my message and helped me put the groceries into my bag.

For fast and easy communication with my family and friends I still prefer using hand gestures and my good old, reliable speech card. The people closest to me know me so well that it takes very little time at all to figure out what I’m trying to say. To communicate with people who aren’t familiar with me, however, I like to use my Phonic Ear.

Despite the fact that they aren’t perfect yet, speech synthesizers certainly have been instrumental in helping me become independent. I now live in a supported-living apartment and I direct my own attendant services. I do my own banking, travel on WheelTrans by myself and go shopping on my own. I’m able to communicate with salespeople without much trouble, and I can put my "two cents" in when I attend professional meetings.

And, best of all, I used my speech synthesizer to say my own marriage vows two years ago.

(Anne Abbott is a freelance writer living in Toronto, Ontario.)