I'm tired (exhausted, actually), but I'm happy, too.
Apart from doing my regular shtick (emails; writing cheques; updating the employees' schedule), I gave the speech I was supposed to do last Wednesday at U of T today.
Here's my speech:
Hello, my name is Anne Abbott and this is my communication assistant Marjie. Marjie will read a speech to you, which I wrote beforehand. Afterwards, if there’s time, I will show you a 12 minute video and then answer any question you may have.
I was born with Cerebral Palsy, which left me unable to both walk and talk. However, perhaps it was because I was born with these limitations that I didn’t view them as such, only as obstacles to overcome. It could perhaps also be due to the type of person I am. My mother often told me that even as a toddler I showed signs of great determination.
I was a social, outgoing person, even as a child. I always wanted to interact with people, to connect with them, to share with them. I wanted desperately 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, very unsatisfying.
When I learned how to read at the age of seven, a speech therapist had the bright idea of giving me a "speech card", which was a piece of cardboard with the alphabet written on it, so that I could point to letters and spell out words and sentences.
This type of communication was definitely an improvement, and I took to it like a duck to water! Admittedly, there were a few drawbacks to this method, though. For one thing, I wanted to use big, important words like my older brother and parents did, but I often misspelled them. Needless to say, by trial and error, I became a good speller in spite of myself.
It was strangers with whom I had the most trouble communicating. Whenever I'd go into a store at the mall, a sales person would usually come up to me and ask what I wanted, could they help me in any way? When I signaled to them that I wanted to spell out words on my speech card, they would give me blank stares or call another sales person over to help them figure me out. As if they thought I was hearing impaired or not quite right in the mind, they would then discuss between themselves how terrible it was that I was alone, that nobody was with me to take care of me. Was I lost? What was wrong with me? Feeling rather frustrated and humiliated by this, I would usually end up by giving up and leaving the store.
As a young woman, I yearned to be more independent. I wanted to do my own banking, to purchase food and clothing by myself, to be able to travel on Wheel Trans on my own. I just wanted a chance to lead a "normal" life like everybody else.
To be able to do this, I felt, I needed a different method of communication. I had seen Stephen Hawking on TV demonstrating how he communicated with his speech output device, and I longed to find a way to get one for myself.
A year later, the Bloorview MacMillan Rehab Centre contacted me and told me that they had lifted their age limit from their program, was I still interested in getting a speech output device for myself? I gave them an emphatic "YES!"
Since then, I've had six different types of speech output devices, including three laptop computers, all of which gave me a lot more independence than ever before. Finally, I was able to get my own apartment, do my own banking; and go out shopping for things I needed. In fact, when I got married 19 years ago, I used my speech output device to say my own vows.
Unfortunately, there are many drawbacks to using a speech output device. Like everything mechanical these days, they seem to like to malfunction at the damnedest times! About 15 years ago, at a conference in London, Ontario, I had programmed a speech into my speech output device and just before it was my turn to speak, it suddenly decided to die on me. I, of course, had to ask someone to read my speech for me instead.
Another problem with speech output devices is that some of them don't pronounce words very clearly. For instance, if I spelled “buses” the correct way it would pronounce it "boosus". If I misspelled it on purpose by adding another "s" -- "b-u-s-s-e-s" -- it would pronounces it correctly. Sometimes, however, even creative spelling doesn't work. I used to spell the word "loonies" every way I can think of and it still sounded strange to me.The mis-pronouncement of certain words and phrases used to land me into a lot of trouble over the years. There was one time, in Loblaws, for instance, I was doing my shopping and 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 meant I wanted to be lifted further back into my wheelchair. I shook my head adamantly, trying to signal to him that this was not what I wanted. He didn't seem to understand this, however, and kept trying to grab me under the arms and lift me upwards. A crowd soon formed around us and some of those people joined in to help the elderly gentleman. Finally, I broke free of their grasping hands and repeated my message. Fortunately, someone in the crowd with good ears understood my message and helped me put the groceries into my bag.
I must admit that of all of the communication devices I’ve had throughout the years – both high-tech and low-tech - I really prefer using my simple yet multi-faceted communication board. It was custom made by me, with all of the words and phrases I use most often. It is also waterproof, lightweight, and very durable. This means that I can go out in any kind of weather without fear of it getting damaged by the elements. And, if my communication board ever did get damaged, it’s easily repaired or replaced quickly. I remember the times when I had high-tech speech output devices and the would frequently break down, it would take weeks if not months to have them either get repaired or replaced. As you can imagine, this used to be very frustrating for me!
Over the years, people have tried to persuade me to go the high-tech route again, but I remain firm. For me, using a speech output device takes a lot of energy out of me (even with word prediction software), while using my communication board to interact with people takes less time and effort because all of my speech facilitators are so well trained and know me so well they almost read my mind.