Gus Estrella1997 Edwin and Esther Prentke
AAC Distinguished Lecturer
Gus and Laura Jane on their wedding day.
Gus Estrella1997 Edwin and Esther Prentke
AAC Distinguished Lecturer
Gus and Laura Jane on their wedding day.
1st Annual Edwin & Esther Prentke
Distinguished LectureHello and good afternoon.
I am here today to accept this significant honor and share all the wisdom I can pack into a short speech, wisdom that I have obtained throughout my short, and yet, adventurous life. Some of you might question my wisdom and that is okay, because sometimes I question it myself. Before the wisdom flows, please allow me to make a few comments on the extraordinary lives of Mr. and Mrs. Edwin Prentke. Their sweetness, their selflessness, and their dedication to people with disabilities has stayed with them throughout most of this century. May I add my humble thanks? I have benefited from the technology Mr. Prentke's work has inspired and so have so many other tens of thousands of individuals. So let us celebrate in our hearts that God has put people like Esther and Ed Prentke on this earth and maintain them here now for nearly ten decades. And now, let the so-called wisdom flow.
During my speechifying career in augmentative communication over the past several years, I have made every effort to make people with disabilities know that someone else has endured the indignities they, too, have endured at the hands of the therapeutic and educational communities. I'm here today to say that despite their relentless attempts to change the system that I have created that allows me to participate in society as a full member, rather than a burden. I have survived them all, with the sweat off my forehead, the drool off my chin, and several broken thumbnails! I've played it for laughs, usually at the expense of our well-meaning helpers. And on occasion, I still do.
I think I've gotten my point across to some speech pathologists that had a thing for putting peanut butter on the roof of my mouth, and making me make obscene noises. Now I have to admit something though, I have found a use for those obscene noises on occasion. So I guess, it wasn't a total waste of time! And other heroines and one medical doctor that thought they knew what was best for me. The following is a brief encounter with a medical doctor that my parents and I endured when we moved from Nogales, Mexico to Tucson, Arizona.
According to this one doctor, the best place for me was in an institution because I wasn't going to amount to much, not even to a hill of beans! I think this is a good point to tell briefly about my parents. If you haven't figured it out yet, I am a Mexican. Your first set of clues should have been my black hair and mustache, and not my accent! When I was born, we were living in Nogales, Mexico, but I was born in Nogales, Arizona. It gives new meaning to the term Wetback, don't you think? In any case, I do have a green card, if any of you are wondering! So as you can imagine, in the early sixties, the last place you would want to be if you had any type of disability was somewhere in Mexico. Don't get me wrong. I love the place! In fact, I hear they make the best relief for constipation, called Salsa! Something to keep in mind here is, at the time, my parents knew very little English and knew less about cerebral palsy, so they could have gone along with whatever the doctor might have suggested and almost did. But fortunately for me, I had a guardian angel looking after me. Ironically enough, that guardian angel was a speech therapist. So in a bizarre way, the main reason why I'm able to sit here in front of you and accept this great honor is because of this profession. I think those of you who really know me, are puzzled with that last statement and I'm sure you’re wondering about what state of mind I am in, but aren't we all? And in case you were wondering, I have surpassed the doctor's expectations by graduating from high school with honors and even obtaining a college degree.
Today I would like to talk in a more serious vein and discuss a series of barriers that people with significant speech and multiple disabilities experience on a daily basis. Some of these barriers are amusing and others devastating. Let's start with some devastating ones first. Of all the problems non-speaking people have, perhaps the greatest is getting the able bodied community to raise their own expectations concerning our abilities and our potentials. A prime example of this is the following. Currently, I live in the Washington DC area. One day, my service dog, Boz, and I were returning from the mall and we were waiting for the Metro. The Metro is the mass transit system for the Washington DC area. There we were waiting. I looked up and saw two very mature women, or so I thought. One started talking about Boz and me. From what I could make out, she was telling her friend that Boz was the one in charge and he was telling me when and where to go. Remember that she assumed that I couldn't hear or understand anything that she was saying. I guess Boz sensed the irony because every time this woman would start talking, Boz would look at her and moved his eyebrows or an ear, making the woman think even more so that he was in charge! Every time this happened, she would turn to her friend and say, see what I mean? I thought about saying something, but I didn't want to risk giving her a heart attack, considering her maturity. Like I said, this is a prime example of how low expectations were placed on me, a person with a severe speech and severe physical disabilities, at first glance. At the same, one could say that ignorance played a part in the woman's assumptions of me!
I'm saddened to say that this happens all too many times in a person's lifetime. I know, personally, this happens to me constantly. Now since this is the annual conference of the American Speech-Language-Hearing Association, I think I should start out with the expectations that some speech pathologists have in my experience. The first and perhaps the most poisonous is that we have to master and demonstrate the mastery of certain language concepts before we're allowed to try communication aids with the kind of power that might help us really talk. Umm, how can I master a language if I can't talk with my own voice, and you won't give me a communication aid? Even mastering a machine can be a complex task, as complex as learning how to dribble a basketball, especially when you have cerebral palsy! Now the question arises at school, how much more time is allotted an able-bodied student to master dribbling, versus the time allotted to help the non-speaking child with his communication aid? Clearly, it's not equal and very different! Especially when the able-bodied student is able to pick up a ball at any given moment, and the non-speaking doesn’t have equal access to a communication aid. We will need help, and by help, I don't mean repeated exercises in pointing to shapes and colors. Maybe pointing hour shape figures? The help we need, and by we, I mean the many, many of us, is in mastering the little words that make up language we hear around us. I think I had to learn to spell before I could use the word “it”. And later I found out if you put the letters, “s h”, in front of it, it has a completely different meaning! And they say, I don't have language skills!
The words I was given were words that would produce pictures, not words that would make language. And they wanted me to master a language? I was also given piles of sentences and criticized for not using them. I don't know about you, but I don't think in terms of preformed sentences. Sometimes I even change my thought half way through the sentence, and I have also been known to throw in a very descriptive word, when the mood strikes me! I can think of few things more dehumanizing and even demeaning than selecting canned sentences from a list. And seeing the subject matter that you want to talk about is nowhere to be found! What gives communication joy is when you tell your partner something he or she doesn't already know, and perhaps you didn't know yourself what you were going to say until you were halfway through composing your sentences!
The living waters of life are contained in the sparkling stream of language as it gushes forth from our tongues, or in my case, my fingers. Yes, I have become a blabber finger. I have even been known to talk with my middle finger! And during these times, you would think I was a taxi cab driver! I am told by some clinicians that certain children can only talk about the here and now and objects they can only see in the here and now. This is raw bologna. I grew up with many other children with severe disabilities, and we communicated up a storm with each other through our eyes. I don't get what clinicians mean, because children with mild to moderate cognitive impairments really can understand a lot. However, when they are given a test in which they are supposed to follow complex instructions and use concepts they may not have experienced much of, they're going to clam up. I sometimes get a wry smile when I hear that a child needs to learn to communicate before he she can attempt to learn language. Personally, I would like to see a clinician take the test that he/she can't explain to the child and ask, so who's the cognitive impaired now? Well the big news here is that little kids with cognitive impairments are often communicating with each other and their caregivers all the time. And most of the time, they talk about the idiotic things that the clinician had them do! When this communication is measured, however, an entirely new social rubric sets in. The communication takes on an unreal quality. The natural communication already developed by the child is not useful in this context. Kids don't tell people things that they're not interested in, especially when they know that the person asking the question already knows the answer. The kid is thinking “Why are you wasting my time? You already know the answer!”
Luckily, I was a bright little rug rat, and I caught onto the game. And started using my middle finger at an early age! But not everybody does. Speech pathologists in my experience have been sincere and hard working; given the limited taste of reality they received in their academic programs. But their best is often figuring what's wrong with us, rather than what we can do. And more often than none, they tend to forget to ask us what our needs are! Commissioner Bob Williams, from the Administration on Developmental Disabilities, uses the metaphor that "we become cloaked in a veil of incompetence." What he means here, I believe, at least partially, are the tools science has developed to help find where to start with us have actually become perverted into barriers.
An oft-repeated witticism is that pre-anything can be used to mean not, for example pre-reading, often means, not reading. Well, let me tell you, what do you think pre-language means? Unfortunately, it usually means, not language. I thank God that my family and one very special therapist, a rarity I might add, saw a lot of potential in me and helped me escape the first barrier of the devastating barriers of assumed incompetence and low expectations.
Let me tell you a magical story. Once upon a time there was a little town called Tucson, Arizona. The little town had less than half a million souls. But in lil' ol Tucson, there's an augmentative communication community that meets regularly, often with more than 50 augmentative communicators in attendance. And many, many of them can talk very well on a variety augmentative communication systems. In fact, though I may be the wisest, most handsome, and definitely available, augmented communicator in Tucson, I am, by no means the fastest. This award would, in fact, have to go to Joe Hill, who could outtalk Don Rickels any day. Thus, as we sit here in Boston, in the middle of a metro area extending from New Jersey to New Hampshire, with its many millions of people, you would expect the aug com user groups to number in the hundreds, if not thousands. I don't see them here today. Why was the mythical town of Tucson so blessed? It was blessed because a team of special educators and speech language pathologists dug in, got the support of both the school and the social services agencies, funded our devices, and made us work our little tails off until we mastered enough language to become competent communicators. The truth is they used whips! If you sow language, you'll reap communication.
The wall people with significant speech and multiple impairments have to hurdle to achieve meaningful employment is the second devastating barrier. Ironically at the present time, about all we have to scale this wall is our communication skills. I am never going to be a successful ditch digger, U P S deliveryman, airline pilot, you hope, but I could perhaps become a lawyer. Right now, I am actually doing pretty well as an L-street Bandit, or as more charitable people call us, lobbyists. But this didn't happened overnight. I didn't wake up one morning and find myself with a job in Washington, DC. The road to my successful employment had its series of roadblocks and detours. I think it started when I graduated from high school and proceeded directly into college.
After graduating from high school, I became terribly ill and started going to college right after high school. To this day I'm not sure what came over me when I made that decision to start right away college. Nonetheless, I found myself going to college at the University of Arizona with a word board. When I first met with a guidance counselor, he gave me some options. So I decided to go on the ten year plan but then I started drinking ten pots of coffee and five cases of Mountain Dew a day. And guess what happened? I graduated in eight years! I started off majoring in computers, the way to the bank, but something happened and I ended up in creative writing, the way to waiting tables. But something was telling me that wasn't an option for me. Maybe making toss salads? It suddenly dawned on me, why I received a funny look from my V R counselor when I informed her about the change. I figured it was because I might be her waiter someday and she would hate it if I found out she was a rotten tipper, plus I might drool in her food out of spite.
Okay, I made it through the first roadblock; I had a college degree! What was next? My degree was in creative writing and something was telling me, finding a job was almost impossible. It wasn't totally impossible, since my degree wasn't in history! So a friend suggested that I try substitute teaching. At first, I thought she was crazy and I was right, she was crazy, but I went ahead and got my substitute certificate. When I started to substitute teach, I starting getting funny looks. Gee, I wonder why? I figured it was a disability thing or something like that. Nevertheless, I actually did receive assignments. I remember one assignment in particular where I was supposed to substitute at a high school in an economics class. When I arrived to the school, I reported to the assistant principal's office, which was an eye opening experience on her part. As she was turning around her jaw dropped, I was just glad it wasn't her dress! She then proceeded to ask. May I help you? Yes, I'm here to sub for this teacher, I replied which threw her for a loop, to say the least. After she had composed herself from the news, she exclaimed. But you're disabled! I just sat there smiling, not wanting to risk losing the assignment but thinking, “Thank you! I'm so glad you noticed! Well, I knew you were a woman, well before I noticed those shoes you're wearing!”
For the most part, I mainly worked in special ed., which led to my previous job as an augmentative communication assistant. I was very much involved in creating the position and making sure I had all of the job's qualifications ensuring that I would get the position that became a full time position with the school district. I would work with students who used, or who were starting to use augmentative communication devices. We noticed that there was a need for students who were starting to use AAC devices, to have someone who they could look up to and who could relate to their situation, in other words, a mentor.
This brings me to the position I currently hold proudly. I'm the first recipient of the Prentke Romich - Semantic Compaction Systems UCPA Leadership Development Fellowship. Now that is one hell of a Liberator mouthful, if you ask me! Now can anyone of you repeat that last statement five times really fast without drooling? Anyway back in December of 1994, I was sitting on my couch relaxing after a long day at work, when I received the announcement about the fellowship. At first, I wasn't really sure if I wanted to apply, it sounded like it would be a good learning experience and it could broaden my horizons. Well without boring you with the details, let's say I ended up submitting the application and you can fill in the blanks after that.
So what made me apply for the fellowship? I mean I'm from sunny and warm Arizona, I had a decent paying job, a comfortable living arrangement, a lot of friends, especially of the female persuasion, and I was willing to give all that up to move to the nation's capital? I must have brain damage! I mean who wouldn't want to experience more politics than a person could ever imagine, or handle for that matter. And one mustn't forget the nice winters that everyone brags about! And if you believed that line, you would also believe that we're in Hawaii and that ASHA is paying for it! I guess basically, I was looking for a change of jobs and surroundings. But the interesting thing about the description of the fellowship was that nothing was said about snow! I realized this little fact during the Blizzard of 96, as I sat stuck at home counting the little bumps of the ceiling in my apartment. Oh by the way, there are 9859001 little bumps, just on the living room's ceiling. I think during the next blizzard, and God forbid there is a next, I'm going to see how many icon sequences does it takes to run down the batteries on my Liberator. I figure that would make Barry Romich very proud of me, don't you think?
Yes, it is devastating those individuals with severe speech and severe physical disabilities have that wall that they have hurdle in order to achieve meaningful employment. But in my humble opinion, what is more devastating is individuals with severe speech and severe physical disabilities are not given the opportunity that I was given, nor are they encourage to dream and reach for the ultimate goal, achieving meaningful employment! Some might argue that luck had a lot to do with my success, and others might say that it was the people I knew. Personally, I think it's a combination of the two, but there are other factors that can be added to the equation. One is I, personally. It was me that had the dream and desire of making something out of myself. I mean I could have been given the top job in the country, but without that desire of succeeding, that job would have been meaningless!
Now the second part of this is who and what put the dream and desire of succeeding in me? One is that doctor, who didn't see any hope for me as a member of society. Proving him wrong has been delightful, and everyone should experience the pleasure at some point in his or her lives! Second, I couldn't disappoint my very special speech therapist that saw a future for me! And lastly but certainly not least, my parents. Personally I can’t explain what guided my parents in knowing what was best for their disabled son. They just did what they thought was natural, and it worked. I know sometimes they have wondered about the monster, they created! And I have done my best to make them wonder about me and the things I have come up with, like moving cross-country! The main thing that my parents did was to encourage me! They never said, no you can’t! Unless it was something that went against their beliefs, like burning down a building! I could never figure that one, I mean it looks like so much fun! What I’m trying to say is, they didn’t limit me because of the disability, nor did they limit the family because of it either. As a family, we did everything that any family would do and went everywhere together. Sometimes there would be steps in to a building where the owners hadn’t thought of the concept called ramps. For the part, these steps would stop someone that uses a wheelchair for mobility, but if you had a father like I did, you would hear, hold on and the next thing you know, you’re going up a flight of stairs. So were there any limitations in my parents’ eyes? Hell no! You wouldn’t want to be the person that told my mother that her son couldn’t attend a particular school. This did happened and let’s just say, two days later I was attending the school that I was supposed to attend! I don’t think language became a barrier in this situation!
Now in all this, there was a barrier and it was between my parents and I. The barrier I’m talking is one that every family experience, but ours was at a different level to some extent. I’m talking about the lack of communication between my parents and I. This lack of communication was due to the fact that I had no real means of communicating with my parents. Yes, I had a word board, but as you will see, that too, became a communication barrier. Now allow me to share with you the significant difference getting an augmentative communication device has made, not in only my life, in the relationship with friends and my family, but more important in the relationship I had with my father before he passed away last September. In trying to find the words that best describe my father, the following words come to mind: compassionate loyal, trustworthy, and caring. The relationship I had with my father could be considered to be unique and a little on the wacky side. I don’t think there was a time when I asked him for something, and he said no! And of course, there are things we did together that my mother doesn’t know about, and for some reason, I don’t think she would have approved of them!
As I mentioned, my parents were originally from Mexico and had to learn English to survive. Even though my father could read and understood English fairly well, he wasn’t able to write it, and this was causing a breakdown in communications between him and me. Now prior to getting the TouchTalker and then the Liberator, I was using a crusty old word board, which meant that I had to spell some words out individually, making talking to my father a little difficult. Talking with my father using my own voice was always an adventure. I can remember trying to say a certain phrase or word that was related to our conversation, but what he thought I had said was usually off in left field or somewhere like that. For example, we could have been talking about what I did on the computer and I would be trying to say, the apple, in Spanish, and for some odd reason, he thought I had said some number like, twelve. Don’t ask how he got twelve from apple, since even in Spanish the two don’t sound similar! And of course, I had a smartass response! I would say, no thirteen! He would respond with, fourteen, and just looked at me thinking, smartass!
But in all seriousness, when I finally had my Liberator, talking to my father became a real treat! Now we were able to carry on a real conversation without needing someone to translate my grunts into real words! We were able to talk about women, not that we would do something like that, mind you! Plus, we were able to talk about all the beers we had the night before, at the football game, without my mother knowing what we really did! Now at the same time, there were advantages of using my grunts, I mean my own voice and body gestures, since nobody knows what the hell I’m saying! Whenever my father and I would start talking without the use of an assistive device, the people around us would start to wonder about my father. Wouldn’t you? I mean if you saw a person carrying on a conversation with someone and all you could hear were grunts and moans and then the person would laugh like a mad man, wouldn’t you want to call the nearest psychiatric hospital?
The importance of having an augmentative communication device became more evident with my moving to the Washington, DC area. Besides from helping me land the fellowship, but I think some extraordinary BS had a lot to do with that too. My Liberator has enabled me to have real conversations over the telephone with my family, including my nieces. When I first got my Liberator, I came to the realization that I was able talk to my nieces, but also enlighten them when they didn’t behave. And that is always fun! Another thing that I find so wonderful about being able to talk to my nieces is, now they can come to me for advice and also we can have our little secrets. I also get a kick with them, because the youngest ones look at my Liberator as a toy or a dog and ask me to make it speak! The oldest ones try to remember a few icon sequences, like for their names. But it’s hard to explain the joy my Liberator has brought me! Because now I can talk to my family, including my little nieces, my friends, and the general public knowing I will be understood.
To summarize key points here today, I would like to give special thanks to Mr. and Mrs. Edwin Prentke for their lifetime of dedication and work in augmentative communication. I would also like to thank Prentke Romich, UCPA, and Semantic Compaction Systems for affording me the opportunity to work where I can make a difference in augmentative communication and in my life. I need to remember that the main reason why I'm able to sit here in front of you and accept this great honor is because of this profession. I am finally glad to understand that speech therapists use peanut butter as a tool to know how well a child’s tongue can make contact with the roof of his mouth or how easily or how difficult it is for the child to phonate. But please remember doing tests of this kind that it isn’t much fun for the client and an explanation of the reasons for doing so is appropriate.
We need to increase the expectations of augmented communicators’ abilities and potentials. We need to rethink how one can learn to talk while at the same time mastering language. Remember, not every basketball player becomes a Michael Jordan. Many, many basketball players who never make it do it for the fun of playing and the exercise rather than for the money. Augmented communicators just want to talk like anyone else. They need the availability of hours of practice, the availability of their communication aid at all times, the proper language technology, and the supports put in place to achieve the goal of communication. It’s not the shapes and colors or the sentences that need to be taught it’s the words that glue language together -- the little words that build the sentences, not the picture words. Children with mild to moderate cognitive impairments really can understand a lot. Oftentimes this means they can actually communicate a lot. They just need the right tools, a push behind them, and proper language therapy to achieve this. The tests which are given offer just a starting point for these individuals, and these tests can sometimes become barriers. Please, use your own good common sense by looking at the individuals’ assets and build on them rather than using tests which state difficulties about the person’s abilities. Dig in, get the support of both the school and the social services agencies, get the devices funded, and make us work our little tails off until we master enough language to become competent communicators.
Please remember pre-language does not mean “no” language. It means there’s a mind in this individual that needs to be developed. People who rely on augmented communication are very fortunate to live in a time when the language technology is available and the prosthetic speech is understandable. Thanks to all of the hard work in this field, augmented communicators now have the chance never before afforded them. Augmented communicators can have a dream life just like mine -- a job, competent and timely communication with family and friends, and a chance to make a difference.
In my opinion, these should be major goals in our field. Thank you.
Gus Estrella
6095 W. Echo Crossing Road
Tucson, AZ 85735
Email: funspastic@aol.com
