Saturday, March 14, 2009

Memories of My Dad

All day long, I kept thinking: Where did a decade go? I can't believe it's been 10 years since my father died.

I can still remember the day my mother called from Florida to tell me the news. I was extremely sad but not shocked because Dad had had Amyloidosis for 5 years, and during the latter 2 weeks of his life his condition had gone down hill speedily.

My father was a strong, quiet man. He loved his family but could be aloof with people he didn't know very well.

He loved playing tennis and watching western movies or tv shows. Mom still has a ton of old slides in her storage room from when Dad used to take pictures of holidays, birthday parties, and vacations. My parents would invite family and friends over and force them to watch an hour's worth of slides, placating them with cocktails and humerous conversation.

Our family took a trip all along the east coast of Canada. I don't remember it, though, because I was 4 or 5 at the time.

I do remember going to Texas and seeing the Alamo. ("Remember the Alamo" was the slogan, and I always have!) I remember my dad carrying me down into the Carlsbad Caverns in his strong arms. And, when I was a bit older (10 to 13), I remember Dad laughing at me for having my nose constantly in a book during our yearly drive to Florida.

I loved my dad, of this there is certainly no doubt. However, love is never just one-dimentional; it has many facets. In some ways we were a lot alike, in others ... not so much. We both demonstrated tendencies towards compulsive neatness and orderliness. We both shared a love of beauty and knowledge, curious about everything. And yet, my Dad had an introverted personality with some old-fashioned thoughts. I, who had my childhood in the Flower-Power, "All You Need is Love" 60's, and my teens in the women-liberating, war-protesting, sexual revolution 70's, sometimes disagreed with my father. I was young and fun-loving; I found my father to be way too cautious and pragmatic in his approach to life.

At one of the lowest parts of our relationship, my father said to me, "One day when I'm gone you'll miss me, Anne." I shook my head admantly, angry at him (I can't even remember why!) and thought: Never, never, never!

For the rest of my life I've regretted saying that to my father and hurting him like that. In the latter years, before his death, I tried to make amends, to get closer to him.

My father was right. He's gone, and I miss him. I wish he could see how well I'm doing.


Wednesday, March 11, 2009

York University Speech

Yesterday, Lenny and I gave a speech to a group of medical students at York University. It was a good experience; the students seemed genuinely interested in what I had to say.

This is my speech:

Hello. My name is Anne Abbott, and, beside me is my communication assistant and friend, Lenny, who will be reading my speech to you. If you have any questions afterwards, I will point to the letters and phrases on my low-tech communication board to answer your questions.

First of all, let me explain that this type of communication is called Augmentative Alternative Communication, and a person, like myself, is often referred to as an AAC User. An AAC User would commonly use a voice output device, or a low tech display board. An AAC user may also use facial expression, body gestures, and vocal tones to relay a want or a need.

Fifty years ago, I was born with Cerebral Palsy. As you probably know, Cerebral Palsy affects people in a wide range of ways, and all, surprisingly, very individualized. For me, it left me unable to verbalize and to walk on my own. Plus, my fine motor skills are not so fine.

I learned early to adapt to my situation. With great determination, I tried my hardest to do what other kids were doing. Sure, it's true that instead of walking I got around in a wheelchair, but I taught myself how to crawl up and down our basement stairs on my hands and knees in order to play games with my brother and his friends.

As for not being able to verbalize speech, my husband Rob always says, “For someone who can't speak, you sure talk a lot!” And it's true! Whether it's serious or humourous, an off the cuff comment or a heartfelt opinion, I have a lot to say.

Right from the very start, as far back as I can remember, I was determined that I was going to communicate. Some how, some way I was going to find a way to express myself!

Like most toddlers, before you learn to speak you learn how to use gestures with your hands in order to make your family know what you need. I was no different. A finger to my mouth meant “I'm hungry”, a hand against my cheek with my eyes shut meant I was tired. And, of course, I learned that facial expressions and eye gazes were another excellent way to communicate.

However, as I grew older I became frustrated. I wanted more! My family could speak in full sentences. They could convey emotion and provide news within a few moments. Why couldn't I?

Eventually, I learned the alphabet and how to read. My teacher suggested to my mother that she should get a piece of cardboard and write down the alphabet and 'yes' and 'no' for me to use as a “speech card”. Finally, I had a faster way to communicate. Sure, I would occasionally misspell words but I gradually learned, by trial and error, to be a good speller.

The members of my family were all avid readers and good spellers, so they had no problem communicating with me. It was only when I started to venture out into the public on my own that I started having problems with communication. Some people were okay; they were patient enough to try to figure out what I was saying. However, there were others that just didn't get me. Right in front of me, I would hear them say things like, “Should she be alone?” I would point to words and letters on my communication board, and much to my annoyance I would hear people saying, “What do you think she wants?” From these kinds of experiences, I learned two things: one, to be patient with people who are actually trying to communicate with me; and two, if people don't understand what I'm all about, and they show me very little respect, I simply leave.

Unfortunately, there are times when a person like me can't just leave. People like me, who use Augmentative Alternative Communication, are frequently, and wrongly, silenced. Because of a lack of patience and understanding, or perhaps even a fear that they'll look ridiculous if they can't figure out what an AAC User is trying to say, people will often take away the person's Communication Device. This happens within the homes of AAC Users, where there is on-site attendant care. It can also happen if AAC Users are still living with their families, and unfortunately, it can often happen in hospitals or in nursing homes as well.

This is the most humiliating thing that you can do to someone who is an AAC user. If you saw someone with a cane walking down the street, you wouldn't suddenly grab it away from them, thinking that they didn't really need it, would you? Of course not. You seem like nice people.

Like I say, I use a low-tech communication display in order to interact with people. I designed it myself, putting in the words and phrases I use most frequently. And, I have the alphabet, too, so I can spell out more detailed messages.

People often wonder why I don't have a high-tech device, one that has a voice. I've tried different types of voice-output devices before, and, to tell you the truth, they're just not for me. The voices are mechanical, they frequently mispronounce words, and operating them tires me out. Not to mention the fact they break down and need to be fixed or replaced every so often. I much prefer having a communication assistant; it feels much more personal and comfortable to me.

However, some AAC Users like voice-output devices and prefer them to anything else. Still other AAC Users use a combination of both techniques. And still others use neither, relying instead strictly on eye gaze or gestures. It really depends on the individual. I should also mention that although I have sentences and the alphabet on my board, other AAC users have symbols and words. Some people use direct selection with their finger or a head pointer, other people simply use eye gaze to make their selections.

It takes patience and some intuition to start communicating with an AAC user. You have to be good at looking for cues in body language and facial expressions. This is not to say, however, that you're supposed to be a mind-reader. Make sure 100 percent that you got the message from the AAC user absolutely right before continuing the conversation. Use 'yes' and 'no' to confirm that you understood what they said. Also, some AAC users have different signs for 'yes' and 'no,' so make sure you know what they are beforehand.

In closing, I would just like to say that people who use AAC are just like anybody else; we have the same feelings and thought and dreams. Take me for example: I'm married to a fantastic guy named Rob, we have two lovely cats named Hershey and Rascal whose images I use in a lot of my art, I have a business called Annie's Dandy Note Cards and Artwork, and I'm president of an organization called Speaking Differently.

Thank you for having me here.

Monday, March 9, 2009

People Who Get it, and Those Who Don't

So, this blog entry is about this past weekend (March 6-8)

First of all, on Friday Sarah and I were going to meet Aaron and Lamia at Tim Horton's. Sarah and I got to Tim Horton's and chose a seat, but we got a call from Aaron saying that they might be a few minutes late. So, because I was having such a hectic day, I asked Sarah if she would mind picking up my cards at TPH (The Printing House), and she said, "No Problem!"

I sat there on my own at the table, minding my own business. Suddenly this woman came and sat down beside me. I was surprised and annoyed, but I thought maybe she'll just leave in a minute. She did not. Instead she took out two pills, popped them in her mouth, and took a sip of her coffee. The woman did not speak to me, nor did she even acknowledge my existence. This started to make me feel uncomfortable. I thought about going after Sarah but then I thought No way, this is my table! Why should I have to leave? Then, what really made me mad, the woman began talking to another woman who was sitting behind me. They were discussing between themselves whether I was ok or not. Did I need help or should they call someone? Finally I exploded! I got the attention of the woman sitting beside me and pointed on my board to: Get Away From Me!

Right about then, Sarah came back to this melee and I told her what had happened. The woman was saying, " I was only trying to help, I am from March of Dimes." Maybe I roared at that comment - I can't remember - but I was infuriated! I know so many people who have terrible attendants from March of Dimes. To say that she was from March of Dimes and seem to actually seem to be proud of this fact - that made my blood boil! Not to mention that she sat with me and actively humiliating me by talking about me to another person and yet not trying to talk directly to me at all. This is not acceptable behaviour for anyone, but especially for someone who works for an organization like March of Dimes which is supposed to be helping people with disabilities lead good, productive lives. March of Dimes workers should know better!

The woman finally left, and I calmed down. Then Sarah went up to get an Iced Capp to soothe my ravaged soul, and another woman came and sat down beside me. This time, however, it was somebody who knew me. She told me her news, I told her mine. It was a pleasant experience. I felt respected, included, and part of the great weave of society.

Well, then on Saturday I had a fantastic day! However, once again I was faced with this polar opposite comparison between people. Let me tell you about it.

I sold two smaller paintings. Fantastic! Fantastic! Fantastic! I met a journalist from the Chicago Sun-Times. He said he was going to do a story on the St. Lawrence Market and he might do a feature on me - how exciting! Then this guy from Ottawa came over to see my art and bought some cards. He told me he was an architect, and I jokingly suggested: Why don't you commission me to do paintings for your building? He thought that was a great idea! He said he might commission me to do several smaller paintings for one of his new buildings. I was so happy!

Some of my regular customers from Indiana came to see me. I love it when they come to visit because they are always very upbeat and interested in my art and in what I have

to say.
One of the people from Indiana was curious about my painting "Feelings of Invisibility," asking if I actually feel invisible. I explained to him that yes, sometimes society makes me feel as if I am invisible.

It was around this time when two burly cops came and started asking my friend and employee Laura questions about a man who was murdered in the neighbourhood. I sat right beside Laura while all this was going on and neither one asked me anything or even looked at me. That's terrible! What if I had some important information? I turned to the guy from Indiana and said "See what I mean?"

Oh well, some people get it and some people don't.