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.


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Unknown said...

Hi Anne,

Thank you for sharing your experience and perspectives on AAC! You described a challenging event of what I believe many AAC users experience; that is, being frequently or wrongly silenced by those who are unfamiliar and/or inpatient with AAC devices and those who use them. I thought it was great that you noted some do's and don'ts for communicating with a person who uses AAC, in addition to making a statement that AAC is very individualized; what works best for one person may not be what works best for another. It was very inspiring to find your blog and see all that you do and have accomplished. I will definitely be referring your blog to others! :)

Unknown said...

Hello Anne,
Thank you for sharing your experiences. I am a doctoral student researching the conflict experiences of individuals who use external AAC devices. I would love to learn from you. Amy

Anonymous said...

Good day, may I know what's the name of AAC device you are using?