Thursday, March 7, 2013

Those of you who know me in real life also know that I work as a communication assistant/ speech facilitator to the most beautiful woman in town - Anne Abbott. Anne is an artist who was born with Cerebral Palsy and she is non verbal. Which means that she is exactly like you except she can't talk. She's also one of the funniest people I know and when we're together we crack jokes and laugh 90% of the time. Dark inappropriate jokes that I hope no one else will ever hear. Which is why even though some of the text below sounds so brutal I was laughing throughout the entire thing, I could imagine her telling me the same stories and cracking up. Anne uses a speech board to communicate. The board contains an alphabet, QWERTY style, and a whole bunch of expressions that she uses often (two of my faves are "people, what a bunch of bastards" and "quick, the lorazepam"). The way it works is, Anne points to words or letters on the board spelling out what she wants to say and you repeat out loud after her so that she knows you're following. I don't know what I would do if I suddenly lost the ability to speak but somehow Anne makes it seem so easy. When we're out adventuring together we often have to deal with people who aren't used to Anne's communication style and it can be hilarious because they start assuming all kinds of shit about her that isn't true. But it's OK because we usually just roll our eyes at each other and Anne smiles and laughs and we're off to the next thing. You can meet Anne in person every Saturday 8am-3pm at the South side of St. Lawrence market in Toronto where she sells her work, drinks lots of coffees and solves crossword puzzles. I'm usually there too! OK. This is taken from Anne's blog which you can also access here. BYE!

Can We Talk?

Today I went to the U of T's speech pathology department and, with Sarah's help, I gave the following speech:

  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.
  Great lovers of books and word games, my family had no trouble communicating with me with the speech card.  My closest friends learned how to communicate with me this way too.  Some of them had no problem 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 how 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 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.
  I went to see some people at the Bloorview MacMillan Rehab Centre in Toronto and asked them if they could help me with my problem. Unfortunately, they told me I was too old for their program.  They suggested that I buy a child's toy called a Speak & Spell from Canadian Tire and use it as a communication aid.  It 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.  Better than nothing, I gave it a try.
  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.
  The mis-pronouncement of certain words and phrases has landed 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 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 knows 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."

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