American Values in AAC: One Man's Visions

Transcription

1 The Seventh Annual Edwin and Esther Prentke AAC Distinguished Lecture Presented by Jon Feucht Sponsored by Prentke Romich Company and Semantic Compaction Systems American Speech-Language-Hearing Association Annual Convention Chicago, IL November 2003 I am very honored to be the Edwin and Ester Prentke AAC Distinguished Lecturer this year. I would like to start with a quick story about how communication is not unique, even for people with disabilities. I attended the ISAAC conference in 2000 when it was in Washington DC. I was already on the road for the better part of a month, because I had a two-week internship at Temple University that ended four days before ISAAC. So I flew home from Philadelphia on Saturday and left for DC the following Wednesday. On the last day of ISAAC, they had a poster session of communication device users who told their stories. I read the first person s story; they started with Bliss symbols, then got a word board, then the Epson real voice, and finally, a modern high performance communication device. I was spooked out about that because that was the same route I took. I went to read the next person s story; it followed exactly the same pattern; they started with Bliss symbols, then got a word board, then the Epson real voice, and finally, a modern high performance communication device. It was at that moment after a good month of working with communication device users; that I understood, there is nothing unique about communication for people with disabilities. What is unique is what people with disabilities accomplish with their communication devices. If communication devices are not unique, like I said, why do we celebrate every time somebody learns how to communicate with one? Why do we act like our work is done when we get somebody communicating effectively? Our work is not done at that point; it s just beginning. It s like finding a penny on the ground and thinking that you are set for life. Do we celebrate every time able-bodied people talk? Of course not, that is a part of every day life. I know many parents and educators who are so happy to have their child be able to just express their needs. I think people who do this are doing a great disservice to their child; because there is so much more to life and communication than just expressing needs. We need to teach children and adults how to communicate their feelings and ideas; by doing this, we get to see their personality and start to understand who they are. I believe that besides teaching our children how to communicate, we need to teach them three fundamental values of communication that I think should be taught to every AAC user. First, they need to know how to use communication to function in mainstream America. Notice that I said mainstream America, I m not saying teach them how to communicate in nursing homes, group homes, or workshops. Sadly enough those places do have their role in society, Jon Feucht, 2003 Annual Edwin and Esther Prentke AAC Distinguished Lecture 1

2 but I don t believe in them for communication device users. I am talking about teaching children who use communication devices, how to use communication in the real world. Secondly, we need to teach them how to use communication to get ahead in life. I am sorry people, but I get offended whenever I hear about people with disabilities who could work but are living on social security. I know people like these who have lived all their lives off the government. We need to change that trend because there is no reason for this. Third, we need to teach them how to use communication to make their mark on this world. I am a very colorful person, as you might have already guessed; I am very vocal about the things that I think are right and things I feel that need to get done. Do I think that every user is going to be as colorful and bold about life as I am? Of course not; if I did it would be really irresponsible on my part. However, it would be equally irresponsible not to try with every child to see if they are a colorful person. So the question now is how do we teach children the three things that I just mentioned. First of all, we need some stand up people with disabilities like myself to take the lead and teach the children of today s world that there is a wonderful life to be obtained by everybody, including themselves. I want to share an anecdote with you from my own life. My dad owns a meat market and when I was in high school, I used to ride with him during the summers as he would make deliveries. We would always listen to talk radio in the vehicle. I remember one time, the radio show host was talking about Bill Gates and how he thought anybody could become the next Gates. At the time, I thought this guy lost his mind, that Gates was one in a trillion. I was like, come on, how many billionaires are there in the world. I thought Gates was no more than a fluke. As I grew up, I thought; you know something that guy was right, anybody could become the next Bill Gates. Let s look at how he became the richest person in the United States. Basically, he had an idea for something that everybody needed. I don t know about you, but I feel that anybody could come up with an idea that could change the world. People of any race could do it, people with disabilities can do it; anybody and everybody in the world has the power to make an important difference. I would like to turn now to how I feel I am making a difference in the lives of people with disabilities. There was one time where I thought, all right I could become a doctor or a lawyer or some other kind of professional; or I could help other people with disabilities become doctors or lawyers. I chose to help other people get there. I did this because if I became a doctor or lawyer, it would just be one person with disabilities being successful; this way, I could help countless people to reach that goal. I really love helping communication device users achieve great things through communication. It s the greatest joy in life for me to see somebody communicate for the first time. As I mentioned before, I had an internship at Temple University in July of I consider this to be the turning point of my life, because it was there that I saw somebody tell their mother for the first time that they loved them. That was when I fully realized that doing this was not only my career but also my life s passion. Jon Feucht, 2003 Annual Edwin and Esther Prentke AAC Distinguished Lecture 2

3 Temple University is in a bad part of Philadelphia and it did scare this hick from Wisconsin let me tell you. On my first night there I was walking on a sidewalk and it started to shake; I thought oh man is this an earthquake. Then it dawned on me, I was above a subway. I wanted to pack up and leave right then and there. What got me through the internship was knowing that I was helping to bring the most precious gift of all to those people: the gift of communication. We were not just teaching communication but we were teaching how to use communication; it was a really powerful experience. Getting back to the idea of teaching the three fundamental values; another way to teach them is in a structured setting like a camp, where they can learn them along side of other AAC users. As I mentioned before, I am the founder of a camp for young people who use communication devices. The camp is called Authentic Voices of America. We just had our third camp this summer. The idea of starting the camp came out of my own problems with communication when I was younger. I wanted to make sure nobody went through the same experiences that I did. The concept of Authentic Voices of America started in the summer of 1999, when I was looking to do something different. I started the camp because I just love helping children with disabilities reach their potential through communication. I wanted to go beyond the training that the communication device companies give. I would like to think that my job starts after device users have learned the basics of operating their device. I will be perfectly honest with you, I have never touched many AAC device, so I have no idea how to teach them. My job is to teach people how to use communication to get ahead in life. That is the goal of Authentic Voices of America. It s just like other camps, in the way that we want the campers to have fun, however, it s much more than that. What we do is provide the campers different situations where they need to use communication. You might be thinking how could this be fun for them. The answer is simple, so simple that they don t catch on; they have no idea the situations have a purpose. If you actually think about it, any activity that you partake in with another person requires communication, whether it is playing a game, trying to figure out problems, or other activities people do just with each other. So we aren t doing anything that special by creating activities that require communication. The three things we focus on are straight talks, which are lectures that I will explain momentarily, getting the campers working together; and just giving them a bunch of new experiences. Let me go into greater detail on each one, so you can get a clearer picture. First, We start each day of camp with an hour-long lecture called Straight Talk, which covers topics that people with disabilities will encounter in their lives. Some of the Straight Talks that I have done in the past are about dreams we have in life, why we use communication devices, and what free speech is. I really believe in these Straight Talks for several reasons, first they are spoken to people with disabilities from a person with disabilities; who has been through a lot of similar experiences that they will face. Next, for them, these discussions could be the first time they heard and discussed real life issues with another person with similar disabilities. I feel Straight Talks are the most important part of the camp. Jon Feucht, 2003 Annual Edwin and Esther Prentke AAC Distinguished Lecture 3

4 The second major part of the camp is activities that get campers to communicate with each other. I believe in doing this because quite often, young communication device users have never communicated with anybody else who also uses a device. Think about that concept; I don t know about you but I find that amazing. What do you think it would be like if you never met another person that spoke English, how frustrating would communication be? It s truly special to see the bonds that form between campers. For the first time they know that they aren t alone in the world; and we foster this through an activity that the campers must work on together. This usually takes the form of having them write a play that they perform the last day of the camp. Ultimately, it gives the campers an understanding of what other people go through while communicating with them; because it allows them to get a feel for what it s like to communicate with somebody that uses a communication device. I cherish my role in it all, because I was twenty-two when I first met another user. I didn t know what other users were accomplishing; I was not sure what I was capable of, because I didn t know anybody like myself. I have a story for you. I was in middle school, so I must have been thirteen or fourteen. I was already thinking about what I could do in my life. An occupational therapist said that they knew a man with disabilities who was teaching wheelchair safety to children with disabilities. I thought; that is ridiculous, a man with disabilities teaching children with disabilities, yeah right. Thank God I was wrong! What I am saying is children with disabilities need to meet and experience other people with disabilities and get to know about their lives. That is something very important and is a huge part of the camp. Another way to teach people who use communication devices about real world communication is through real life experiences; which is the last main goal of camp. One way I do this is finding an activity that I can experience for the first time along with the campers. It allows the campers to see that I haven t done everything yet, and it gives us a common perspective. I am big on the idea that people with disabilities should get as many real life experiences as they can get. This applies to everybody, whether it s me or another person with disabilities. I am a firm believer that real life experiences often lead to real life. We do something really simple. However, the campers always really enjoy it. We take them to the movies. They enjoy this because they can get together with people like themselves and laugh at somebody they both like. I would say that a lot of them have never been to the movies, which is another real life experience that they get while at camp. I would now like to give you a bigger picture of the camp and what I want each camper to get out of coming. First of all, I am a huge believer in dreams and goals; I want each camper to go home with the idea that they can dream big and accomplish anything that they set out to do. I believe this because I am living proof of it and I have seen many people with disabilities do the same. If I could go to college, if I could finish college and get into grad school, while building a nationally known camp; then so can other people with disabilities. A part of me started this program to show that other people with disabilities can accomplish as much as or more than what I can. I think that is just beginning to happen because we already have one of our former campers in college and might I add, she s doing excellently. Jon Feucht, 2003 Annual Edwin and Esther Prentke AAC Distinguished Lecture 4

5 That wraps up the goals and objectives of Authentic Voices of America; I would like to turn to some other ideas about people with disabilities and living with a disability. I hear so much that people with disabilities never have normal lives; and I always think about how ridiculous that sounds. First of all, what s normal? Secondly, I don t know about you, but I know people with disabilities who are accomplishing more than able-bodied people. Look at Bob Williams, who won this award in He worked under President Clinton; how many able-bodied people do you know who have accomplished that? I will be honest with you, even though I have my bachelors, am working on my masters and run a camp; I am always looking to meet successful people with disabilities, especially people with cerebral palsy. The first thing I look for is whether the person is married. Now okay, I bet you re thinking why does he do this? Well, I have accomplished so much in my life already but getting married is my ultimate goal and even I need to see other people doing that. I would now like to share with you some of the qualities that I think I have that I feel that other people with disabilities need to develop in order to get ahead. First, I have this saying that I live by; never think about who you are or where you re from, just think about what you can do. I rarely think about the fact that I am disabled; in fact, I view my cerebral palsy as my biggest advantage in life. I think I can touch and change more lives as somebody who is disabled then what I could if I weren t. People with disabilities must forget that they re disabled and just take on life. Another thing that I feel is very important is an excellent work ethic. I am always working or thinking about what I can be doing. I rarely take time and just sit down to relax. I truly believe that nothing worthwhile doing, comes easy; and every person with disabilities must put in the work needed in order to achieve things. I get a lot of my inspiration from a doctor who has cerebral palsy herself, doctor Janice Burstorm from Saint Louis. She specializes in working with children with Cerebral Palsy and what she does that I am a big fan of is whenever she meets a new patient, she always asks them, all right, what do you want to be when you grow up. If you are asking yourself, so what s so special about this, I salute you. The truth is, very few people ask people with disabilities what they want to be, and when people do, it s often followed by, you can t do that, you re disabled. Obviously that is wrong, however, I know people who are professionals in the field who do this exact thing. We shouldn t limit people with disabilities. Keeping that in consideration, I would like to tell you why I think I am so successful. I grew up in a school district that did everything but limit me. I was always mainstreamed from a very early age. They did not only mainstreamed me but they also expected a lot from me. They didn t let me get by with anything. I think they knew that I had to go to college and make something out of myself. Unlike other school districts around the country, mine really pushed me to achieve. I think having people who knew me and expected me to achieve made the biggest difference in my life. I would like to get into how I communicated in my own childhood and throughout my life to date. First of all, I started with Bliss symbols when I was three, and that turned into just a word board. I did have an Epson, but I did not really use it. I didn t like it because you had to spell Jon Feucht, 2003 Annual Edwin and Esther Prentke AAC Distinguished Lecture 5

6 everything out and I am a very poor speller. So I accomplished everything until I was twenty with a word board. I graduated from high school, and got into college with it. Everybody knew I needed voice output but I thought I communicated just fine. Then one day during my first year of college, I pulled up to a service desk and started to point at words on my board. The person behind the desk couldn t even see what I was doing let alone know how to communicate with me; so they called the police; and I ran. I knew then that I needed something more than my word board. During high school and my first year of college, I tried every device available and nothing worked. Then my assistive technology support person from the college said I should try a particular device. I said I would but if I was disappointed, I wouldn t try another device for a long time. So I tried the device and had instant success. The key to the success was that I did not have to spell or use word prediction for most of what I said. My system is fun to use and much faster. After this session, I would be happy to show any of you how it works if you re not already familiar. I would like to turn back to my education, because as much support as I got from school, my mom was scared to send me to college because I couldn t orally communicate with other people. I realize today that she was right and we took a big risk by sending me off to college without anyway to communicate verbally. Now, every time that I meet somebody who is nonverbal and wants to go to college, I always ask them Are you going to get a communication device? I do this because like doctor Martin Luther King, I have a dream. Like his dream, mine is simple but will take decades to achieve fully. My dream is to accept communication device users into mainstream America completely so that they can work where they want to work, live where they want to live, and perhaps most importantly, to let them lead the lives that they want to develop for themselves. Thanks. I would like to thank ASHA and the special interest division twelve for their continuing support to recognize the achievements of individuals who rely on AAC. Iris Fishman, and the selection committee for all their work, along with Dr. Katya Hill from the AAC Institute for organizing the nomination process. Finally, I want to thank the Prentke Romich Company and Semantic Compaction Systems for sponsoring the lecture series. For anybody who has ever sat down to talk with either Barry Romich or Bruce Baker, they know that they re true gentlemen of our field, and I m honored to know them personally. Jon Feucht, 2003 Annual Edwin and Esther Prentke AAC Distinguished Lecture 6