Hello, my name is Anne Abbott and this is my communication assistant Sarah. Sarah will read a speech I wrote beforehand, and then I will answer any question you may have.
When people ask me what the most difficult
thing about my disability is, I always answer quickly and without doubt.
"Not being able to talk," I tell them. "That's the most
frustrating thing I have to deal with in regards to my disability."
Even as a child, I was a social, outgoing
person, 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, one of my teachers 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
synthesizer, 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 synthesizer for
myself? I gave them an emphatic
"YES!"
Since then, I've had six different types of
speech synthesizers, including three laptop computers, all of which gave me
great independence. 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 18 years
ago, I used my speech synthesizer to say my own vows.
Unfortunately, there are many drawbacks to
owning a speech synthesizer. 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
synthesizer and just before it was my turn to speak, my speech synthesizer
decided to die on me. I, of course, had to ask someone to read my speech for me
instead.
Another problem with speech synthesizers is
that some of them don't pronounce words very clearly. For instance, there was one, where, 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.
I must admit that of all of the speech
synthesizers I’ve had throughout the years, laptop computers included, I really
prefer using my speech card when I'm communicating with the people I know best:
my family and close friends. I've heard that a lot of non-verbal people
like myself feel this way. Using a
speech synthesizer takes a lot of energy and I think most people who use these
machines get worn out quickly, just as I do.
On the other hand, using a speech card to communicate takes less time
and energy because the person you're talking to know you so well they almost
read your mind.
I guess the best and simplest form of
communication would be to actually be able to verbalize for myself. Since no one has figured out how to make this
possible yet, I'll just have to use the tools at hand, imperfect though they
may be, until something better comes along.
Thank you."
After the speech and question period were both over, Sarah and I headed across the street to Tim Hotons. There, we smiled and chuckled at some of the things that had occurred within the classroom.
The teacher had told the students that I had been interviewed by the CBC Radio One's Sook-Yin Lee on the subject of body image. I elaborated and told them that I had said during the interview that in my opinion it was important for everybody to love and treasure their own bodies because it would be the only one they'd ever have. I added that if anybody put their body image down, they should tell that person to "go to hell!" And then I smiled and said I had used stronger language in the interview.
Sarah said that she thought I had made an impression on the students. With my golden flared raver pants, my golden crushed velvet tank top that showed off my magnificent tatts, I looked, according to Sarah, like "a real bad ass!" This made me happy because if the students were able to pick up on the unique ways of how I talk and dress, it means they can see me as a person, an individual, not just a person who's non-verbal.. I hope that when they graduate and become speech pathologists to remember to see people they meet not only as clients but as individuals as well.
1 comment:
what a lucky class of budding pathological speakers!
xo
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