The Lived Experience of Using a Speech-generating Device by Kathy Lynn Howery A thesis submitted in partial fulfillment of the requirements for the degree of Doctor of Philosophy in Special Education Department of Educational Psychology University of Alberta © Kathy Lynn Howery, 2017 ii Abstract The field of Augmentative and Alternative Communication is emerging understanding of both practice and praxis. Speech-generating devices (SGDs) are becoming smaller, more powerful and more accessible to people with complex communication needs. There is a growing body of evidence based practices that speech language pathologists, teachers and families can draw upon to understand how best to support people who use these devices to effectively communicate throughout their daily lives (Beukelman & Mirenda, 2013; Drager & Reichle, 2010; Light & McNaughton, 2014). Despite these exciting advances, there is still little understood about the phenomenon itself, that is what is it really like to speak with/through a SGD? Research Question: What is the experience of speaking with a machine by one who is severely speech impaired? This essential question is explored by employing the existentials of lived relation (relationality), lived body (corporeality), lived space (spatiality), lived time (temporality), and lived things and technology (materiality) (van Manen, 2014). Method: This study draws upon the phenomenology of practice (van Manen, 2014) as a method of researching lived experience in order to glean insights into what it might be like to speak through a device, the meaning of this phenomenon in the lives of those who use SGDs, and implications for pedagogical practice. Phenomenological studies seek to shatter the takenfor-grantedness of everyday life by stepping back from preconceptions and theories and invoking an attitude of openness and wonder to the meaning of experiences for people as they actually live through them. iii Participants in this study include young people with cerebral palsy who use so called, high tech devices to communicate using computer synthesized speech on a regular basis. Their experiences with their devices have been collected through interview, their written descriptions, and close observation. Additional lived experience material has been gathered from published accounts of other device users both from traditional print media. Texts (“Findings”): This inquiry resulted in four manuscripts where I have explored various meaning-aspects of what it is like to speak with a SGD. The first text, Phenomenological Investigation Into Speaking With A Machine, borrows McLuhan’s notion of extension and amputation as heuristics to explore the phenomenon at hand. The orientation is toward postphenomenology (Selinger, 2006) as it explores human-technology relations; how these devices both extend the user’s ability to speak while simultaneously amputating what might be considered access to meaningful communication through voice. The second text, The Speech-generating Device Thing, presents an exploration of the SGD as a thing in the Heideggerian tradition (Heidegger, 1971). This paper explores the question of what an SGD is as it is called upon to do the ordinary every day task of speaking for one who cannot. How does the experience of SGD use contribute to the essential meaning of this phenomenon? Text number three, Out of time in the classroom, focuses particularly on the existential theme of temporality reflecting on how time is experienced when speaking with a SGD. In the final text, What does the non-speaking child say? aims at going beyond perceptions of people about, and of, SGDs to provide educators and other professionals with a glimpse into the phenomenon of speaking with SGD in the lifeworld of a child. This text in particular was aimed at those in the field of special education, and will hopefully be accessible and useful for those who may come into contact with a non-speaking child in the classroom. iv Concluding Comments & Significance: Through these texts I explored possible experiential realities from a pedagogical perspective, challenging educators and related health professionals to consider the unique, yet recognizable, experience of a child who uses a SGD in order enter into the taken for granted world of one who speaks, must do so through a machine. The texts also have implications for adoption and development of value-sensitive design practices for the field of rehabilitation technology. The study addresses a gap in augmentative and alternative communication literature, as there is little qualitative research in the field, particularly as it relates to the experience of people who communicate through augmented means. Finally, this research also addresses a significant gap in the philosophy of technology, as assistive technologies are decidedly unrepresented in this area. v DEDICATION This work more than any other in my life is dedicated to my parents, Edward Look and Gail Marie Sitler Look. It is through their experiences that I was called to be begin it, and through their strong and ongoing presence in my life that I was able to finish it. vi ACKNOWLEDGEMENTS As anyone who has completed a significant undertaking knows, such things are never really without the support of so many others. Certainly this has been the case with my work. There have been scores of people who for whom I owe a huge debt of gratitude. I know I cannot begin to thank everyone, but I would like to mention a few who were of particular impact. Those of you not mentioned, please know I value your contributions tremendously! To Dr. Albert Cook, who first inspired me and who throughout my career has been a source of guidance, support, and challenge – the wonderful kind of challenge that pushes one to think, and to be better as a person and a practitioner! And, to Dr. Karen Erickson for your leadership, your insights, and always generous support, and, for suggesting that if I was going to do this phenomenology thing I should spend a day using a SGD to speak. You were so right! That day which not what I would call a success, was certainly an pivotal one in my journey. To Dr. Max van Manen, there are not words that can express my ongoing respect and awe of what you have brought to my practice by helping me enter in to yours. Thank you for being patient with a soul wandering lost in the world of phenomenology, and most of all thank you for our lovely talks! I hope that we have the opportunity for so many more! To Dr. Cheryl Poth, who became not only my teacher but a friend. I will always cherish the time and the work we did together. It was not only important, it was fun! Thank you to Dr. Dave Edyburn and Dr. Alisa Lowrey for you generous colleagial support. I look forward to continuing collaborations. To my committee members: Dr. George Buck, Dr. Catherine Adams, Dr. Veronica Smith, Dr. Denyse Hayward, Dr. Karen Pollock and Dr. Jeffery Higginbotham. To each of you I owe a world of thanks. You have contributed in such substantive and uniquely important ways. vii Thank you so much for you ongoing, and unfailing, support in me and this project. I will always be grateful for your guidance and for your friendship. A special thank you to Dr. Higginbotham for providing me with the external validation that I so dearly needed early in my phenomenological journey and for your insightful comments on the end product. To the amazing women in my heurmentic circle who wrapped their arms, their experience, and their understanding around me in support. Dr. Erika Goble, Dr. Nicole Glenn, and the (soon to be) Dr. Iris Yin. Our meetings were a source of such power for me. I hope we will continue to write, talk, and laugh together for many years to come! To the people young, and some now not so young, who let me enter into their lives so that I could try to capture the essence of a phenomenon that I have yet to experience, a world of thanks!. And to the all other young people who I have encountered who speak through aided means, thank you for being so open and willing to have me enter, at least briefly, into your lives. Thank you for taking the time to answer what may have seemed like my never ending stream of questions, and thank you for allowing me to attempt to shine a little light on your world. Each of you shone a dazzling light in mine! To my family. First to my sisters Sandi and Karen. For the pushes, pep talks, and the ongoing and enthusiastic cheers from the sidelines. And most important of all to my husband Darryl and our amazing daughters Megan and Alicia. You never for one moment let me believe that this was not possible. Thank you for talking with me about it, for trying to understand it and through doing so helping me to understand it myself, and for celebrating in my journey even in moments when I did not. You made all the difference! viii Finally, I wish to acknowledge the generous support of the University of Alberta through the Queen Elizabeth II Scholarship awards, and the Canadian Disability Policy Alliance research award. This financial support has been of tremendous value. Table of Contents Chapter 1: Coming to the Question ................................................................................ 1 A Lifetime of Assistive Technology .......................................................................................... 1 Coming to the study ................................................................................................................. 17 Whispers of the Question ........................................................................................................ 18 Hearing the Call ....................................................................................................................... 23 Heeding the Call ....................................................................................................................... 28 The Question ............................................................................................................................ 31 References: ............................................................................................................................... 33 Chapter 2: Overview and Organization of the Text .................................................... 37 Chapter 3: Communication and Literacy for Students with Complex Communication Needs ................................................................................................................ 42 Introduction .............................................................................................................................. 42 What is Augmentative and Alternative Communication? ................................................... 43 Who are students with Complex Communication Needs? ................................................... 44 Foundational beliefs ................................................................................................................. 49 Communication, Language & Literacy ................................................................................. 52 Best Practices in AAC Supports ............................................................................................. 63 References ................................................................................................................................. 69 Chapter 4: Phenomenology as the Method of Inquiry ................................................ 82 Phenomenology of practice ..................................................................................................... 84 Elements of phenomenological inquiry .................................................................................. 85 The path of this inquiry ........................................................................................................... 91 References: ............................................................................................................................. 109 Chapter 5: Phenomenological Investigation Into Speaking With A Machine ........ 113 Introduction ............................................................................................................................ 113 Transformational Technology .............................................................................................. 114 Voicing One’s Being In The World ...................................................................................... 115 Extending One’s Space .......................................................................................................... 117 Finding One’s Own Voice ..................................................................................................... 117 But The Voice Is A Machine! ................................................................................................ 118 References: ............................................................................................................................. 121 Chapter 6: The Speech-generating Device ................................................................. 122 The SGD as object.................................................................................................................. 124 The Speech-generating Device as Thing .............................................................................. 127 The Silent Partner? ................................................................................................................ 142 References: ............................................................................................................................. 145 Chapter 7: Out of Time in the Classroom .................................................................. 148 Background ............................................................................................................................ 152 Reading about time. ............................................................................................................... 154 The challenge of time ............................................................................................................. 155 The delay speaks of me .......................................................................................................... 157 The broken conversation ....................................................................................................... 163 Planning to talk tomorrow .................................................................................................... 166 Text Time ................................................................................................................................ 171 Implications for Practice ....................................................................................................... 173 References: ............................................................................................................................. 177 Chapter 8: What does the Non-speaking Child Say? ................................................ 184 Who are the people who might use SGDs? .......................................................................... 185 Speech-generating Devices .................................................................................................... 186 Listening to the Voices of Non-Speaking People ................................................................. 187 Investigating the Experience as Lived Through ................................................................. 195 What is it like to speak through a machine? ....................................................................... 197 My words are not my own ..................................................................................................... 204 Out of time .............................................................................................................................. 208 Discussion ............................................................................................................................... 211 Limitations .............................................................................................................................. 214 Future research ...................................................................................................................... 214 Implications for practice ....................................................................................................... 215 References: ............................................................................................................................. 218 Chapter 9: A call for pedagogical listening. ............................................................... 226 The importance phenomenological understanding. ........................................................... 227 The gnostic and the pathic. ................................................................................................... 229 From knowing to understanding. ......................................................................................... 231 Beyond an instrumental understanding. ............................................................................. 234 Adopting a pedagogical orientation. .................................................................................... 236 References: ............................................................................................................................. 240 Bibliography .................................................................................................................. 242 List of Table Table 1: Memoirs and personal accounts of persons with severe speech impairment…………………………………………………………. 187 Table 2: Studies focused on perceptions of AAC users and/or their families …………………………………………………………….. 189 List of Figures Figure 1. Example of PIC Symbols……………………………………………… 7 Figure 2. Example of Unicorn Keyboard connected to Apple computer through Adaptive Firmware Card……………………………………………….... 8 Figure 3. An example of an Etran communication board in use………………25 Figure 4. Oral and Written Language Development in the Common Core (Koppenhaver, Coleman, Kalman & Yoder, 1991)……….............……57 1 Chapter 1: Coming to the Question A Lifetime of Assistive Technology My journey to this study began more than thirty years ago. In 1982 I was hired to work as a communication consultant at a school for children with what was termed in the day severe and profound disabilities. These were children with the most challenging conditions: cerebral palsy so severe that they could not control any parts of their body; traumatic brain injuries that resulted in complete paralysis; and intellectual disabilities so significant that they had been deemed not only uneducable but un-trainable. The categories into which people with intellectual disability were placed in the early late 1970s and early 1980s were educable, trainable, or profound (Alper, 2003). While there were programs for children who were deemed trainable or educable, and in fact even curricula for these children in Alberta, there was little to no thought given to educating children who were identified as profoundly mentally handicapped. This was the time in many places around the world, including Alberta, where these children were just gaining the right to go to school, never mind the right to be included in their neighborhood schools. Looking back, we had few resources to draw upon as we sought to provide learning experiences to these students. My background in psychology, especially behavioral psychology, and psycholinguistics was by no means specific or even usual preparation for such a position, yet most teachers and speech-language pathologists (SLPs) of the day were ill prepared to meet the complex needs of these extraordinary children. What I brought to the position was a strong background in behavior and behavioral analysis and the belief that every child could and would learn. I believed I could shape communicative behaviors through operant conditioning. I also came with a strong background in linguistics and language. It seems rather strange to me now that radical 2 behaviourism (Skinnerian psychology) and Chomskian understanding of language and language acquisition somehow merged in my mind when considering children with significant disabilities. I had moved from the study of Psychology to Psycholinguistics precisely because I felt language was somehow different, somehow a uniquely human endeavor that could not just be reduced down to the mands and tacts of Skinner’s analysis (Skinner, 1957). Yet, at the school I found myself drawing upon my behavioral psychology training far more than cognitive psychology. These were children whose innate ability to acquire language was so hidden by the challenges of their physical beings or their intellectual abilities that at the time I had little to no understanding of how to provide them the opportunities to partake in the language and literacy experiences that today we know are so key to their learning (Erickson, Clendon & Hatch, 2010). Along with being a time of significant change in education, it was also a time of significant advances in technology. Rehabilitation engineers were designing specific technologies, which we now call assistive technologies, to help people with various disabling conditions compensate for the challenges of their bodies. Computer synthesized speech was being developed and marketed to people who were blind and had visual impairments (Rowe, 2010). Ray Kurzweil had developed the Kurzweil Reading Machine, the first print-to-speech reading machine in 1976 and was working on speech recognition technologies (Erickson, Clendon & Hatch, 2010). Technologies that would compensate for physical disabilities were also coming to market. There were devices like the Zygo 16TM and the Zygo 100TM that allowed people with limited movement to scan through an array of 16 or 100 (hence the names) symbols or words to communicate. There was no voice output to these systems merely lights that indicated which symbol was selected. There were also electric typewriters, and these enabled some people with physical disabilities to strap on head sticks to type to communicate (Creech, 3 1992; Nolan, 1987; Rush, 1986). Perhaps the most significant adaptive technology of all was the invention of the adaptive firmware card (AFC) in 1977 by Paul Schwejda and Judy McDonald (Stevens, nd.). This remarkable technology allowed people with disabilities to access the Apple 2 computer in a variety of ways including multiple modes of switch access and alternative keyboard access. The AFC was for people with physical disabilities what screen reading technologies were to the blind - life changing. In the fall of 1983, one year into my tenure at the Child Development Centre, I was given $1000 to spend on assistive technologies that might benefit the students. I set upon purchasing a variety of these early assistive devices. While researching what tools I should add to the Centre's AT toolkit, I happened to hear that a rehabilitation engineer from California had been invited to speak on computers and their use by people with disabilities. It was this talk, arranged by Elaine Heaton and given by Dr. Al Cook, that I must say changed the course of my career. That day Dr. Cook not only convinced me that what I really needed to buy for the centre was an Apple computer and an AFC, he also convinced me of the liberating power these technologies might afford the children I was working with. While I did take (and barely passed) a computing course in my undergraduate degree program and completed my Master's thesis using Textform on a remote terminal connected to the university’s mainframe computer, this was the extent of my computer knowledge. Suddenly I was going to training sessions on the AFC in Boston and learning how to insert the AFC into the motherboard of the computer, develop programs in Apple Basic, and even building switches! I was becoming a techie! What was far more astonishing however was what the students I was working with were able to do. I recall a young boy with cerebral palsy who was one of the so-called boat people 4 from Vietnam that had come to Canada as refugees during these years. He was unable to speak and had extremely limited control of any part of his body. But he laughed at jokes, and his eyes shone with understanding, even though English was not his first language. I believed he had much to say if we could only find the way for him to say it. We positioned a switch under his chin, and he was able to play the Frog & Fly game and to find the letters of his name from the array the AFC displayed at the bottom of the computer screen. While we didn’t ultimately hear his voice, we certainly were able to see that there was a child with much potential in that little challenging body. And we allowed him to engage and have fun in ways that without technology he would have never been able to do. I recall a young girl engaging in a simple math activity using the numbers 1 to 10 that I had programmed to input through the unicorn adapted keyboard. While she seemed pleased with herself, it was her father's face and the faces of her teachers that told the story of this young lady. With technology, she was able to show that she was much more capable than her body could express. She was now considered in this new light of ability. These were heady times in the emerging world of assistive technologies, and certainly exciting times for me as I had found what I felt was the key to unlocking the potential these children had to actively and meaningfully interact with the world. Augmentative And Alternative Communication. Early years. My formal introduction to augmentative and alternative communication (AAC) also happened in the 1980s. My primary role at the Centre was to support the development of communication skills of the children. Every one of them had what would today be referred to as complex communication needs (CCN), and I was from my first day interested in AAC, although I did not yet know it was really a thing in which someone could be interested. 5 The reason I was hired to work at the Centre when typically it would have been a position filled by a speech-language pathologist (SLP), was my educational background and interests. My passion for alternative means of communication began when in my university studies I was introduced to the work being done in the 1970s to teach apes to communicate through symbolic language. I was fascinated by this work, and in many ways, it was the studies of Washoe and Koko being taught to sign (Gardner & Gardner, 1969) and Sarah being taught to use symbols (Premack & Premack, 1972) that led me away from behavioral psychology and into psycholinguistics. What I came to understand through the ape studies is that it was not only humans who could learn to communicate using abstract symbols. What did seem to be evident from the early studies with the great apes, however, was that none of them acquired a robust language that went beyond that of a human toddler (Hixon, 1998). This was intriguing to me. Did this indeed mean that humans were uniquely capable of a robust language system? This notion that language was indeed the one thing that made us unique as a species was what drew me away from a behavioral psychology and toward psycholinguistics. During my graduate work in psycholinguistics, I also became interested in studies of Deaf aphasics. Although ASL had been widely accepted as a language by many for years, it was such a different mode of speaking that psychologists, linguists, and psycholinguists were and are still interested in studying ASL speakers. So it can be said that throughout my studies of language, I was never much interested in those who can speak with their voices. When I was faced with children who could not communicate with their natural voices I was nonplused – I had always been more interested in non-speech forms of communication than speech forms anyway. 6 Interestingly, during my research for this study, I became re-acquainted with the work of Mary Ann Romski and Rose Sevcik. During the time that I was working at the Centre, Drs. Romski and Sevcik were researching their System for Augmenting Language (SAL). SAL was built by integrating the findings of research from the Yerkes Regional Primate Research Centre and the emerging voice output communication technology that was developing in the field of language intervention (Romski & Sevcik, 1996). Theirs was some of the first work that truly focused on the importance of voice output devices (speech-generating devices). In re-discovering their work on this journey, I have drawn from their research projects both in lived experience material and in my analysis. In 1982, just shortly after being hired for the position of communication therapist I was sent to an international conference on AAC. It was an amazing event in my life. I came away with ideas, many ideas, beyond speech and sign language that I could apply to support the children at the Centre in communication. The most important of these was the idea that we could use pictures and pictographic symbols. While I had read about the Premack symbols that were used with the chimp Sarah, and I heard a little about BlissymbolicsTM the first graphic system to be adopted for widespread use in AAC (Glennen & DeCoste, 1997), this was the first time I had seen a symbol set that I believed my be appropriate for the children with whom I was working. The PIC (Pictogram Ideogram Symbols) symbol set consists of 1,500 white-on-black pictoimages that are designed to reduce figure-ground discrimination difficulties (Maharaj, 1980 cited in Beukelman & Mirenda, 2013). 8 Like the Canon CommunicatorTM, the HandivoiceTM was primarily useful to those who were literate and who could access the keys by pointing. So, for the students I was working with while these devices were exciting to consider, they were not providing them with access to a voice. The children were not literate, and many of them could not directly access a device by pointing with their fingers. What was useful was the combination of alternative keyboard dubbed “the Unicorn keyboard” connected through the AFC to the Apple computer that now with the added invention of the EchoTM speech synthesizer could “talk”. The Unicorn keyboard, so called likely because many who used it used a headstick to access it, was the precursor to today’s IntellikeysTM keyboard. It was a large (14 inches by 21 inches) yellow touch sensitive keyboard that had 128 programmable cells. Figure 2. Example of Unicorn Keyboard connected to Apple computer through Adaptive Firmware Card I could program a cell or group of cells to send a message to the computer and then to the Echo speech synthesizer thereby creating a system that would, in fact, be a large, definitely not portable, speech-generating device. There were now many students who could come into my office and touch pictures that I had pasted onto the Unicorn board to request toys, or games, or 9 food. The things I imaginded they would want to say if they had a voice. In actuality the Apple 2, AFC, Unicorn keyboard, Echo speech synthesizer system that I had put together and programmed to say a few words was not so much a communication device as a testing device. In those days, as is still often the case today, children with complex communication needs (CCN) had to prove themselves able to use a SGD. What I was essentially trying to do was to teach the children about a picture based voice output device so that perhaps someday one of them would be deemed capable enough to acquire one. It was the time of the candidacy model of AAC (Loncke, 2014). In the 1980s it was believed that there were a series of decision points to go through to decide if a child/person with an impairment of speech was or was not a candidate for AAC (Musselwhite & St. Lous, 1988). The thinking, at least in the early 1980s, was that a child must demonstrate at least Stage 5 sensorimotor intelligence, and if they could not, AAC systems were not recommended (Glennen & DeCoste, 1997). Given this thinking, the children I was working with would not be candidates because of their intellectual disabilities or at least their ability to demonstrate any intellectual abilities they possessed. In 1982 a provincial team of specialists had been established in Alberta to provide services to students with severe disabilities. There were professionals from a variety of disciplines in this provincial team, including SLPs who were to serve students with severe speech impairments. However, for a student to qualify for speech-language services, and therefore specialized AAC, we had to prove that their expressive speech delay was not related to their intellectual disability. There was in fact even a formula. To gain access to AAC services it had to be shown that a child's expressive language ability was half that of their intellectual ability. Of course, this was extraordinarily hard to prove. 10 The words of the 2012 documentary Certain Proof: A Question of Worth (Ellis & Ellis, 2010) ring true for the students at the Centre: “What if you couldn't speak? Or use your hands? How would you prove you understand? That you can learn? That you matter?” Today I often use these words to open talks I am giving on AAC, but I think I felt the poignancy of it far more when I was back at the Centre in the early 1980s. I was trying my best to prove to the teachers, the parents, and perhaps even to the children themselves that they could communicate, that they could have a voice, and that we were so very interested in hearing it in whatever modality they had available. During my tenure at the specialized school myself and some other early adopters of AT and AAC came together regularly to share what we were learning about using the computer to support language and communication skills. We called ourselves Apple Babble. The outcome of this little group was a series of conference presentations and ultimately a chapter in a conference proceedings (Howery, Lopushinsky, & McCarthy, 1987). Looking back on this chapter today I both smile and grimace as, strangely enough, what we were saying thirty years ago seems to need still to be said. 1. The computer is only one tool that can be used to foster language and communication development. Interactive methods of language therapy should remain a focus, with computer programs used only as a supplement where appropriate. 2. The computer should not be seen as an end in and of itself. 3. The computer can be used to simulate various augmentative communication aids, but is often not the aid of choice due to portability and mounting consideration. (Howery, Lopushinsky, & McCarthy, p. 38) We are still reminding people that the computer, iPad, even AAC device is only one part of an AAC system. Anyone who uses AAC also needs access to many ways of communicating, high tech, low tech (e.g., letterboard), and no tech (gestures, facial expression) (Williams, 2004). 11 The real communication comes not from the technology but from the interaction with others, and sometimes, the technology can actually get in the way (Pistorius, 2013). I continue to be surprised by people who state that the goal for their child is to get an AAC device. I once read an Individual Program Plan (IPP) that stated as a goal – to get a communication device. Of course, such a goal to be written on a student's IPP is absurd considering the student has no way to get themselves a device. Gaining access to a SGD for a child only happens through the actions of adults. The goal for any person with CCN is to become a more capable communicator. Today this question tends to be, “what AAC app should I get?” However, it is not the acquisition of an app that is so important but the expansion of the person's communication partners and abilities (Gosnell, Costello & Shane, 2011). Finally, the interesting question of the computer, or perhaps today we might substitute in the iPad, as maybe not being the device of choice. The whole question of iPads as communication devices is much discussed today. The parallels in the conversations we were having in the 1980s and 90s around computers and the conversations that are going on today about using iPads as AAC devices are interesting, to say the least. While the computers were hardly portable, needed external speakers, posed great problems in mounting, and had limited battery life many people looked to them because they were less expensive and easier to acquire than the specialized speech-generating devices of the day (Pistorius, 2013). Today the iPad and other tablets are lightweight, definitely portable, relatively easy to mount, and there are hundreds if not thousands of apps available that provide some kinds of AAC support. But tablet computers are not dedicated devices, their speakers are not created to project sound across the room, and perhaps comparable to older personal computers they were made to be multi-functional. The multi-functionality tends to be lost when one needs to use an iPad to talk. While there are ever 12 increasing numbers of people who are using them as communication devices, there are many who point to the fact that they may be reasonable tools to simulate a SGD but they fall short of equating to one (Abbott & McBride, 2014). One may not be remiss in suggesting in the world of AAC technologies, the more things change, the more they stay (surprisingly) the same. Phase two. Shifting towards inclusion. In the 1990s I was working in an early childhood education program with a focus on including children with significant needs in their neighborhood preschools and kindergartens. Interestingly, this program had been started some years before by parents of two children who were attending the Child Development Centre but who wanted something different for their children. So in some real sense, I was moving along with those parents to an offshoot program that served children in their home and community, not in a specialized Centre. This was in tune with the movement towards inclusive education at the time (Winzer, 2007). While the 1980s saw legislation that gave every child a right to an education, the 1990s were a time when special schools and special classrooms were being closed, and children with all abilities were being educated in their community schools. In line with this movement toward inclusion, Alberta’s various specialized curricula for students with disabilities were replaced with a series of resources for Programming for Students with Special Needs (1995). This series was developed to provide practical suggestions about instructional strategies, classroom management, preparing individual program plans and understanding the nature of special needs (Alberta Education, 1995). The discontinuation of the specialized curriculum meant there was only one curriculum for all students in Alberta, the Alberta Programs of Study. This series guided teachers in planning from the Programs of Study to meet the needs of all students. 13 It is of interest to note that the issue of how to appropriately provide for the educational needs of students with differences, especially intellectual differences remains at the forefront of educational conversations today. In Alberta, we no longer talk about special education but rather have embraced the term inclusive education. Inclusive education, and how to appropriately design and deliver quality educational opportunities to students with disabilities, remains an issue of much challenge and controversy in Alberta (Alberta Teachers Association, 2014) and across Canada (Thompson, Lyons & Timmons, 2014). AAC advances. In the early 1990s the AAC technology and the AAC field had made great strides. The AAC journal, launched by the International Society for Augmentative and Alternative Communication (ISAAC) in 1985, was well established and filled with articles. The first of what would be many textbooks written by David Beukelman and Pat Mirenda on the subject was published in 1992. Several other texts were also being published in the area providing clinicians and educators with a store of information on assessment, implementation and ongoing support of AAC. In 1989, Janice Light had published her seminal work on communicative competence for individuals using AAC systems. She challenged the field to think about the competencies that are necessary if one is to be successful in communicating with AAC. These include the competencies needed by all of us (linguistic and social) but also competencies in employing strategies to engage in successful interactions given the limitations of any AAC system, and the competencies required in learning to operate the devices. Light pointed out that for people who use AAC systems linguistic competence means both the ability to understand the oral language that is being spoken all around them and the ability to understand and use symbolic language of their AAC system. Social and strategic competence involve a whole new set of demands given 14 the challenges of AAC. People who use AAC may only have a limited number of words available to them on their systems and therefore have to be strategic in what they can say that will be understandable and appropriate. People who use AAC must be strategic in their social interactions, as many of the means of expected social engagement may be difficult to engage in (small talk) or not possible (looking at a person while speaking to them, as the device user must be looking at their device). Light’s work greatly influenced the field of AAC and certainly had profound impact on my own understanding of what we as educators of children and youth with CCN and their families were tasked. Yet, much of what I needed to learn in this regard was yet to come in my professional and personal life. During this time work in aided language stimulation was being first published by Goossens, Crain & Elder (1992). Aided language stimulation is a technique whereby the communication partner points to the symbols on the communication display as they are interacting verbally. This approach supports a contextualized naturalistic mode of language learning that had been abandoned by more strictly behavioral approaches. Goossens, Crain & Elder’s (1992) book Engineering the Preschool Environment became something of a guide book during the time I worked in the inclusive early education program. Modeling of the AAC system to the child and with the child became a mantra. I had educators label things in students' environments with the symbols they were expecting the children to learn and use. And I encouraged activity-based communication boards to be made for and used in all the child's classroom routines. Like so many things that we did in the early days of AAC, the notion of activity specific communication displays has gone out of favour. Instead, today the field is embracing more generic communication displays that focus on core vocabulary that can be used across a variety of settings (Fallon, Light, Kramer Paige, 2001). Once again this has been a 15 reminder to me that focusing on how all children learn and use language is the key to understanding how our practices in AAC should be guided. Aided language stimulation has been shown to be a critical component of AAC supports and services (Dada & Alant, 2009; Drager, Postal, Carrolus, Castellano, Gagliano & Glynn, 2006; Romski & Sevick, 1996) for children with CCN, including those who have autism. Despite this clear evidence, encouraging teachers, assistants and even parents to model on the device while talking to a child who is learning to use AAC was difficult for me in the 1990s and remains a challenge today. While it is not that people do not want to do this, or disagree with the concept, it is truly just difficult to slow down and intentionally speak with the child in the system that we are expecting them to use to speak with us. As will be seen in the chapters that follow, speaking with a device is not easy. Not for a child who must use one to speak, and definitely, it seems not for the persons around them who themselves are speakers. Phase three. In 1996 I took a position at the Assistive Device Service (ADS) at the Glenrose Rehabilitation Hospital. During my time with the ADS, I established what came to be known as Computer Play Days. These were opportunities for clinicians, teachers, parents and children to come in and explore the specialized equipment, devices, and software that they may be considering purchasing. I also was actively involved in providing ongoing professional learning activities for people throughout the province. As a result, both hands on learning and professional development remain a key feature of the I CAN Centre for Assistive Technology today. In my second year at the ADS I had the opportunity to visit several Assistive Technology Centers in California, and spend a day at the Bridge School. The Bridge School was established in 1987 by Neil and Pegi Young as a specialized school program where children with severe 16 physical disabilities received the support they required to communicate effectively (https://www.bridgeschool.org/about/history.php). In order to assist educational teams in overcoming the challenges involved in educational inclusion of students with AAC needs, the Bridge School was created as a place where students would come for a short term (could be years) placement with the primary goal to provide students with appropriate AAC technologies and functional communication skills so that they are sufficiently prepared to continue their education in their own local school districts (Hunt-Berg, 2005, p.117). The work of the Bridge school has been and continues to be influential in the field of AAC. For example, the Social Networks planning and implementation tool was developed in collaboration with the Bridge School (Blackstone & Hunt-Berg, 2011) and research on outcomes of students who attended the school have informed the field in terms of critical practices in AAC implementation and teaming (Hunt-Berg, 2005). Given the success of the Bridge School, I was determined that we should try to create a similar opportunity for Alberta students. While we could not amass the financial resources to create and run such a specialized school, I believed we could try to recreate some of the experiences for children, their teachers and their families by setting up short term immersive AAC and technology learning experiences at the Glenrose, using the resources of the ADS. Thus began what was to be a series of camps where we brought in students, their teachers, educational assistants and parents to help them support the students in the context of their schooling. Today various camp models are described in the literature (Dodd & Gorey, 2014; Dodd & Hagge, 2014; Kent- Walsh, Binger & Malani, 2010). AAC camps are proving a popular and seemingly viable way to provide students who use AAC devices with immersive 17 experiences, as well as to help train the communication partners who are so important in AAC success. While at the ADS my primary focus came to be more on literacy and less specifically on the AAC devices. It was becoming clearer and clearer to me that the students we were serving needed to have meaningful access to literacy supports and well as communication supports. In retrospect, I now see that many of the approaches I took in providing access to literacy did not in fact support the students in developing actual literacy skills. I was symbolating text constantly (putting symbols with text), which we now understand not only does not help with learning to read, but in fact decrease the likelihood that students will learn to read (Erickson, Hatch & Clendon, 2010). I was also encouraging the students to write using their AAC system. While this provided them with more practice in using their systems to communicate, it made it easier to bypass learning to write with the only symbols set where you can truly say anything you want – the alphabet. I have come to understand that the approaches I was advocating for were in fact at best emergent literacy behaviors and if people with CCN are to become truly autonomous in their communication moving from emergent to conventional literacy instruction is key (Koppenhaver, 2000). While we talk today about 21st century learning, and digital literacies, without the ability to read and spell children and youth who SGDs will never be able to say what they want, to whom they want, whenever they want. The alphabet is the only truly generative symbol system for a person who relies on AAC. This fact has become more and more apparent to me as I have embarked upon this research and as I continue to engage with people who use AAC both in my studies and in my life. Coming to the study 18 The final road taken to this study began September 3, 2008 when I embarked upon doctoral studies. This day was especially important in that it was also a day where clearly unbeknownst to me, I was to be thrust into experiencing having voicelessness in my personal life. On September 3, 2008 as I was settling into my assigned office at the university, and attempting to write an application for financial support, my apparently vibrant and healthy mother was being admitted to the Royal Alexandra hospital. She died three short months later, on a respirator, without the power of speech. While I did not yet understand the personal impact that interacting with speechless loved ones was to have on me, I would over the next two years come to understand it deeply. Upon entering my doctoral program, I had no intention of focusing on AAC. Indeed, my plan was to be doing a multiple case study on Universal Design for Learning (UDL). I had been doing work across Alberta in the area of UDL and had become something of an expert on this new approach to designing accessible learning opportunities. I was, I thought, coming back to graduate school to gather empirical evidence to support what was at that point a much touted promising practice. But, as the John Lennon lyric suggests, life is what happens when you are busy making other plans (Lennon, 1980). Life for me was about to take unexpected turns, and my plans to dig deeply into the promise of UDL in practice became sidelined by what I see now was an ever more insistent call to go back to the passion of my heart, AAC, and to be compelled to consider what it is really like. Whispers of the Question Where is your device? After leaving the I CAN Centre, I would on occasion bump into some of the young people who attended our early “camps”. Children who I had been so sure were going to be 19 competent communicators with their devices. I recall meeting one of the girls and her mother at a summer festival. I was surprised, and I must admit a bit disappointed, to see that she didn’t have her device with her. I went up and said, hello and after chatting a bit with her mother a bit, I chided her for not having her “talker” with her. Her mom said it was kind of useless to bring the device to the event because it was all outdoors. She reminded me that the devices are rather ineffective outside as the screen is all but impossible to see in the bright sunlight. That gave me pause as I considered how much my children and I were conversing about the goings on at the festival. How frustrating I thought it is that the technology is so poor that one is only enabled to speak indoors. My response was to fix the problem. I suggested to her mother (interestingly not to the child herself) that perhaps an umbrella strategically placed might provide enough shade. She smiled and said that she would try that, but somehow as she walked away I got the distinct impression that I was being placated. I never considered that the well positioned umbrella while perhaps allowing her to say a few words with her device would also very likely impede her view of the marvelous goings on at the festival. I think about that now; I didn't think about that then. On another occasion I encountered another of the children at a local shopping mall. Once again, no device. This time when I asked where the device was, her mother’s answer was that they had just left it at the AT Centre as it had to be sent in for repair. Again I was in problem solving mode. I asked why they didn’t have a loaner device. The child’s mother shrugged and said by the time they sorted out a loaner the other device would most likely be fixed. I understood that she was probably quite correct, but still I was somewhat annoyed and unsettled that the child was left without a voice. I asked if they had complained to the company about the device not being robust. Again the mother smiled at me and assured me that this was just part of 20 the deal. Something she, and I suppose her child, had just come to see as an ordinary event in their lives. Looking back, I see that while I was a bit disturbed by these encounters, my only response to them was to think that we had to come up with better solutions! More reliable technologies must be the answer. I had still not really stopped to consider what it might be like to not be able to see your voice, or to have to send your voice away for repair. For me the real question was only beginning to take shape in my mind. What was going on that these young people who I saw as so capable with their devices were so often without them? And what must it be like for them to once again be rendered speechless? The story of the Diving Bell. In 2007 the book The Diving Bell and the Butterfly was made into a movie. The book tells the story of Jean-Dominique Bauby, the editor of ElleTM magazine, who suffered a brainstem stroke rendering him paralyzed. While his mind is still perfectly alert and able, his body is absolutely non-responsive; it is called locked-in syndrome. He only had one movement that he could control: he could blink his left eye. I first read this book a number of years before. It was suggested to me as it told the story of a man who communicated by blinking his eye, a story many reasonably expected I would be most interested in reading. The method of communication he used was what we in the field would call partner assisted (auditory) scanning. The partner (hearer) would slowly recite the alphabet and he would blink when the letter that he wanted was spoken. Painstakingly slow. Extraordinarily demanding for both of them. I was at the time of reading this book still working at the Assistive Device Service and the book did not sit well with me at all. Reading the book at the time actually made me angry 21 that someone had not provided him assistive technology. Why the heck was he relegated to this eye blink system that was so slow and kept him so dependent on another human being to be his interface with the world? In fact, my anger and annoyance at what I saw at the time as being a huge gap in his services actually got in the way of my reading the book. I checked the date of publication thinking that perhaps is was written many years ago, before such technology had been developed. But no, it was published March 1997. While the technology was not as advanced as it is today, there was certain assistive technology available. So why didn’t somebody get it for him? What I took away from the experience of reading the book was frustration at the failure of people to provide him with technology, not the story of an indomitable spirit of survival as is suggested on the cover leaf. Thankfully in 2006 I had another chance to enter into Bauby’s story. It was in a theatre in San Francisco. I was there at an assistive technology conference and had taken a colleague along to the conference to show her the positive powers of assistive technologies for students with disabilities. We decided one evening to go to the movies. The Diving Bell and the Butterfly was playing. As the story unfolded on the screen in front of me I found myself beginning to think the same thoughts. Why don’t they give him technology? In one scene he is left alone in the hospital bed with the TV. I cannot recall if someone turned it on and left or turned it off and left, but either way, I remember him being left alone without any means of controlling what he would or could watch. My frustration kicked in! He could have an environmental control unit, he could have a switch, he could at least turn the TV on and off instead of being left so very alone and helpless. 22 As the story continued, he was introduced to the partner assisted auditory scanning system that he came to use to communicate and to write his book. Once again I was annoyed by what I was seeing. Surely someone could do better than this painstakingly slow system. However, as I sat in that movie theatre something utterly new occurred—not in the storyline, but to me. As I was watching him slowly methodically one letter by one letter communicate with his attendant. She spoke the letters a – b - c – d – e – f – g and he blinked his eye to select “g” then a – b- c – d- e – onward to “o”, blink, G O, “good?” she would ask, “blink” he would “say”. But here is what I saw:. a man and a woman in a caring interactive relationship, together working tirelessly, hour after hour crafting his text. She would patiently and methodically say the letters, he would blink when she reached the one he wanted, she would write the letter down. The back and forth of their system relied on both of them working together to co-construct his words, his sentences, his book. What I was seeing before me was not the desperate need for technology but the amazing the power of two human beings communing to bring forth one person’s voice. With this method, partner assisted scanning, Bauby had forged a real connection to another human being. An intimate connection. The system was dependent on two human beings working together to create the messages he was conveying. It was beautiful and it was powerful. As I watched I found myself considering what I would have provided for him had I had my way. It would be a scanning system, but one without the need of a human assistant. I would have attached a switch to his forehead or perhaps eyelid that would capture his movement, send it by a cable to an interface which would in turn allow him to choose letters from a computer which would provide a scan system. He likely could have written by himself. He would have had no need for a human interface - he would have been independent, but at what cost? What if I had indeed been his therapist, what if I had intervened? Rather than engaging for hours on end 23 with a human being, would Bauby have been situated in front of a computer screen blinking his book to a screen? If I had had my way, would he have had close and regular human connection? Or would he have been left alone hour after hour while he composed his book on the computer with his eye blink? Would he have had the physical and emotional support to compose his book? Would he have even begun? Hearing the Call I mentioned my mother entering the hospital the same day I entered doctoral studies. I also revealed that she had passed away on a respirator unable to speak. She was in her last days not unlike Jean-Dominique Bauby, locked into a body that no longer could be willed to do her bidding. But, unlike Bauby, my mother was extremely ill, ravaged by an unremitting and unstoppable autoimmune disease that even the doctors did not really understand. In her last days in the ICU I asked her if she would like it if I brought her a device to try to say a few things. She shook her head, no. Of course she was so sick and so weak that she probably would have been unable to push any buttons to say anything. I have to say looking back I was not surprised in her refusal. What kind of talking device could I possibly provide her and teach her to use that she could use to talk to us when she was so sick? And, perhaps I was just a little afraid of what she would say. Was she afraid? How was she really feeling attached to all those tube? While I wanted to know, the knowledge that I was so utterly helpless to change anything someone made her imposed silence something of a relief. That is until the last day. The last day when we were asked what we wanted to do, to keep her on the life supports that she was on, or to turn off the machine. On this day I would have given anything to have been able to hear my mother’s thoughts. Instead, what I heard was a physician’s projections on the direness of the situation and the report from the palliative care doctor that my mom had indicated that she was tired and ready 24 to go. There was no other course of action of course. But to this day I wish with every fiber of my being that I would have been brave enough to try harder to hear her voice. Hearing my father’s voice. A year after my mother’s death I was to once again face having a parent in the ICU without the ability to speak. In November of 2009 my father fell, broke his neck, and postsurgery to fuse his spine was on a ventilator. My father was not sick like my mother had been the previous November, but he was paralyzed from the nipple line down and would be for the rest of his life. His mind, however, was completely intact and this time I was determined to hear his words! In the spinal cord ICU I was able to find a letter board, but little else in terms of tools to help patients who were temporarily voiceless communicate. My father could sort of hold a marker in his right hand and point at the letters but it was difficult for him to be precise and it exhausted him. On the third day post-surgery things seemed to have taken a turn for the worse. He had pneumonia and was having a very hard time coming off the vent. This was also an 81 year old man who had lost the love of his life who would now be a quadriplegic once he did get out of the ICU. While given my background and expertise in assistive technologies, I could have certainly helped him to learn to participate in the world to some degree, but it would have been an extremely difficult life for my once vivacious and active father. I needed to hear what he wanted. So I went to the I CAN Centre and borrowed an E-tran (see Figure 3. below). This seemed to work well. Dad understood easily what he was to do, and was able to direct his end of life care by spelling it out to me with his eyes. 26 There have been several studies into the use of AAC in the health care (Blackstone & Pressman, 2016; Costello, 2000). Over my career I have heard several stories of failure to provide access to communication for people with CCN who are hospitalized. On one occasion when I was still working at the AT Centre, I had asked a young woman who had a SGD to do some practicing on it when she went back to the ward that evening. She was staying in hospital for a few weeks to recovery from a surgery and I was hoping to use this opportunity to help her practice using her device. The next morning when she came to see me it was apparent that she had not accomplished what we had agreed that she would. I was annoyed with her and told her so. For whatever reason, perhaps because she didn’t have the words, or perhaps I didn’t have a way to listen, she didn’t really tell me why she had not prepared. Later that day I went to the ward and asked the nurses if they could help ensure she had some time so she could practice. They informed me that she didn’t have her SGD with her while she was on the ward. They locked it away so that it wouldn’t get damaged or stolen. They only gave it back to her in the morning when she was going back to see me. I was horrified, mostly at the fact that I had scolded her for not doing what I had asked. But also that in the rehabilatation hospital where there was a specialized AT service, the nursing staff would not understand the importance of having one’s voice with them at all times. Of course, I had to admit that their concerns were genuine as the device cost several thousand dollars and they would not want to be responsible for it being lost or damaged. I was left with the reality that she would not be able to practice talking or learning her system or doing any other “homework” while on the ward. The next day my 27 student received an apology from me for taking her to task on not practicing. How could she practice speaking when her “voice” was locked away in the closet? There is a growing recognition that people with CCN who use AAC are among the world’s most vulnerable populations in health care settings (Blackstone & Pressmand, 2016, p. 69). Yet it seems that what I experienced when my parents were without voice in acute care settings is common, as few health care workers know how to communicate with them (Blackstone & Pressmand, 2016). There is a growing understanding in the field that work needs to be done to build awareness and provide solutions for both short term and long term voicelessness. Studies out of Boston report on intentional work to ensure that people who need AAC over the long term, or for just the time post-surgery are being provided with SGDs (Costello, 2000). How wonderful it would have been if in the days before my mother was forced to go to the ICU we could have developed and/or practiced some form of AAC is being done in the hospital in Boston (Costello, 2000). There is increasing recognition of the value of supporting AAC systems during hospital stays in that without being able to effectively communicate patients health, both medical and physical, is at risk (Blackstone, Beukelman & Yorkston , 2015). I cannot help but reflect on how I might have not have ever really been called to consider what it might really be like to be without a means of clear communication if I had not been called upon to hear my father’s voice. Attending to the Call. While the world seemed to be sending me the message that I needed to focus my doctoral work on the field that first spoke to me nearly three decades earlier, it was not until I was sitting in a Educational Technology lecture in early 2010 that my direction really began to change. That 28 lecture was given by Dr. Catherine Adams who was, unbeknownst by me at the time, to become my early muse and my continual mentor on this latter part of the journey. In that lecture Dr. Adams was speaking to us of the philosophy of technology. She introduced us to Heidegger’s (1962) hammer and the McLuhans’ (1988) tetrad. The very idea that there was a “philosophy of technology” was beyond anything that I had ever conceived. I was wrapped in something that I can call skeptical fascination. In the class we were asked to use McLuhan’s tetrad to explore a technology that was of particular interest to us. Despite the fact that my paper for this class was to be looking at text-to-speech supports for struggling readers, the technology that I chose was a SGD. When I was called upon to share my attempt at exploring McLuhan’s mode of analysis I talked of a SGD as extending voice, reversing into a toy, obsolescing communication boards but I could not imagine anything that it might retrieve from obsolescence. In retrospect, it was a very shallow analysis, but the very process was so far from the ways I had been taught to consider any technology that I felt like I was swimming in very deep but strangely inviting waters. Happily, Dr. Adams was seemingly pleased by my attempt but she was intrigued by the technology that I had chosen. The following week I found myself having coffee with her. In that coffee shop we continued the dialogue we began that evening in the Ed Tech class for some two hours. At the end, she had convinced me to take Max van Manen’s final graduate seminar in phenomenological writing and research. And, that my topic of inquiry was to be the experience of using a SGD. Heeding the Call Coming to phenomenology. 29 I certainly never came to phenomenology, the most I can say is that phenomenology has come to me. It is an approach, a philosophy, and a method that I am still far from truly understanding but which I am continually seeking to understand. Max van Manen’s doctoral seminar put me in a state of confusion and wonderment that I cannot say I had ever experienced in a class before. How could one possibly reflect on the prereflective? What did that even mean? And how could one possibly seek to understand something by stripping away your theories rather than working from them? The gleam of hope that I hung on to was that I had heard of Husserl, the father of phenomenology, during my courses in psycholinguistics. I had a vague memory of understanding the meaning of things through their thingness. For some reason the example of what is a chair stood out for me. In my time in linguistics we were doing semantic mapping, and we had to try and sort out what made a chair mean chair. How was a chair different from a couch or a stool? What was it that made it a chair without which it could not be a chair? It was this memory of the semantic analysis of chair with all its weblike structures that ultimately helped me to find an entrance to Husserl, Heidegger, Merleau-Ponty and most importantly to van Manen. Once again my earliest interests and my current destination seemed to be realigning. I came to understand that the goal of phenomenology is not to provide evidence or to theorize but, rather, to evoke a sense of wonder in the familiar. To wonder deeply about what one had heretofore taken for granted. This was the transformational power of the seminar for me. I was led to be curious about the technology and the area of practice that I thought I knew well. I thought I understood much about SGDs and the practices that surround them. I suppose I do. But as I tried to understand phenomenology through the process of doing a preliminary study, I was surprised again and again about how I didn’t know, how perhaps I couldn’t begin to know, 30 without having sought the lived through experience of using a SDG to speak. Understanding the pedagogical imperative. My year long struggle in coming to a place where I would truly feel confident enough to embark upon a phenomenological study has far too many moments of marvel to be recounted here. I must, however, address my reconceptualization of pedagogy at the hands of Dr. van Manen. His phenomenology is of practice, and that requires an understanding of the pedagogical orientation of one’s work. The word pedagogy was one that I had seldom heard during my early career. We did not speak of pedagogy in the field of AAC or even in the field of special education. We spoke of evidence-based practices and of interventions. Then I worked for a time at Alberta Education and the word pedagogy was used incessantly. People spoke of pedagogy as the methods of teaching or the practice of teaching. Good teachers had good pedagogy. They knew how do design and teach a lesson in a way that was engaging and appropriately challenging to the students in their classroom. For my world at the time good pedagogy meant appropriate use of technologies in the classroom including assistive technologies, and good pedagogy meant embracing the principles of UDL and putting them into practice in your classroom. But this was not the meaning of pedagogy that I was introduced to by Dr. van Manen. For him, pedagogy had a different, broader, and most certainly a deeper meaning. Pedagogy describes all those affairs where adults are living with children for the sake of those children’s well-being, growth, maturity, and development (van Manen, 1991, p. 28). This notion of pedagogy then extends well beyond educators and the knowledge and scripts that they employ in teaching. Pedagogy in van Manen’s view related to the caring and reflective practices of all those who may be involved in bringing a child forth into the world of adulthood – parents, teachers, 31 educational assistants, therapists, psychologists. For the children in my study, the children with CCN, it is not uncommon for scores of professionals play a role in their lives. And their interactions with the children had impact, not always positive. I was to consider how an approach that included pedagogical thoughtfulness might be brought to bear on my practices and ultimately to my field. What I learned (and still am learning) is that to act with pedagogical thoughtfulness involves being a competent professional, with training and skills relevant to one’s particular domain, but that is not enough. To come into a pedagogical relationship to a child one must also care deeply about the child and what they are becoming as they learn and grow. To come into a pedagogical relationship to a child one must have abiding hope and trust in the child’s possibilities. And to come into pedagogical relationship to a child one must take, and be granted, caring responsibility that ensures the child’s well-being and growth towards mature selfresponsibility (van Manen, 1991). These notions go far beyond the notion of putting in place evidence based practices, or teaching parents and educators how implement AAC strategies. This understanding of pedagogy means entering into relation with the child, seeking to understand the meaning of their experience in their developing lives. Pedagogy also demands careful selfreflective approach to one’s practices involving children and their families. It is this type of pedagogical orientation that guides and shapes the phenomenology of practice. It is the taking on of such an orientation that can result in one being changed in one’s practice. I know this because seeking to understand and act pedagogically during the course of my research into the meaning of speaking through a SGD in the lives of young people with CCN has forever changed how I understand my work and what I understand my work to be. The Question 32 I began with an overall question in mind. What is the experience of speaking with a machine by one who is severely speech impaired? While this certainly remains the driving question in my study, many other questions have arisen during the course of my investigation into this phenomenon. I have been guided by the lifeworld existentials (van Manen, 1997). How are SGDs experienced as things by those who use them to give voice to their thoughts? How do those who speak with an SGD experience speaking space? What is the embodied corporeal experience of speaking with a SGD? How does a SGD user come into relation with their device? What kind of relation is it? What is the experience of time when one must speak using a SGD? And perhaps the most important overall question is one of lived-relations? What does speaking through a SGD do to and for relations with others? This study is primarily an account of the lived experiences of those living a profoundly technologically mediated life. The participants in my study move about in powered wheelchairs, write exclusively with the use of keyboards, and perhaps most crucial to their being in the world, they speak using a machine. Our ability, to speak to and with each other, may be the most important thing in the life-world of humans (Locke, 1998). If voice is indeed the most primary means of contact between human beings (van Manen, 1991, p.174), then what is the meaning of voice when one is called to express it through technologically mediated means? 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Ape Language Research: A review and behavioral perspective. The Analysis of Verbal Behavior, 15, 17-39. Howery, K., Lopushinsky, A., and McCarthy, C. (1987). Language and communication applications for microcomputers. In David Baine, Dick Sobsey, Lorraine Wilgosh, and 35 Gerald M. Kysela (Eds.) Alternative Futures for the Education of Students with Severe Disabilties. Edmonton, AB: University of Alberta. Lennon, J. (1980). Beautiful Boy. Double Fantasy. Finland: Geffen Records. Locke, J. L. (1998). Why we don’t talk to each other anymore: The de-voicing of society. Touchstone: NY, NY Loncke, F. (2014). Augmentative and alternative communication: Models and applications for educators, speech-language pathologists, psychologists, caregivers, and users. San Diego, CA: Plural Publishing. Musselwhite, C. R. and St. Louis, K. W. (1988). Communication programming for persons with severe handicaps: Vocal and augmentative strategies. Boston, MA: Little, Brown and Company. Pistorius, M. (2013). Ghost Boy. Nashville, TN: Nelson Books. Premack, A. J. & Preamck, D. (1972). Teaching language to an ape. Scientific American, 227(4), 92-99. Rowe, D.A. (2010). From Wood to Bits to Silicon Chips: A history of developments in computer synthesized speech. In John Mullennix and Steven Stern (Eds.) Computer Synthesized Speech Technologies: Tools for aiding impairment. Hershey, PA: IGI Global. Ryndak, D.L. & Alper, S. (2003). Curriculum and Instruction for Students with Significant Disabilities in Inclusive Settings. Boston, MA: Pearson Education. Skinner, B. F. (1957). Verbal Behavior. New York: Appleton-Century- Crofts. Thompson, S.A., Lyons, W. & Timmons, V. (2014). Inclusive education policy: what the leadership of Canadian teacher associations has to say about it. International Journal of Inclusive Education, 1-20. 36 Williams, (2004). Confessions of a Multi-modal Man. Alternatively Speaking, 7(1), Augmentative Communication, Inc. Winzer, M. A. (2007). Confronting difference: an excursion through the history of special education. In Lani Florian (Ed.) The Sage Handbook of Special Education, Thousand Oaks, CA: Sage. van Manen, M. (1991). The tact of teaching: The meaning of pedagogical thoughtfulness. Albany, NY: State University of New York Press. van Manen, M. (1997, 2007). Researching lived experience: Human science for an action sensitive pedagogy. London, ON: Althouse Press. Van Manen, M. (2001). Professional practice and “Doing Phenomenology”. In S. Kay Toombs (Ed.) Handbook of Phenomenology and Medicine. Dordrecht: Kluwer Press. Van Manen, M. (2007). Phenomenology of Practice. Phenomenology & Practice, 1(1), 11-30. 37 Chapter 2: Overview and Organization of the Text This dissertation presents a series of papers focused various aspects of the life world of young people who augment communicative abilities with speech-generating devices. Each paper offers up different insights about the phenomenon of speaking with a SGD; each is also aimed at slightly differing audiences. All but one of the papers (Chapter 3) aims to maintain a primarily phenomenological focus. Some papers, directed more specifically to AAC professionals including speech language pathologists, educators and rehabilitation engineers, vary in method from what might be considered purely phenomenological writing. In this attempt to meet the expectations of the world of special education, and to make this study recognizable to the field as research based, the attunement to phenomenological writing at times veers more toward qualitative research that borrows from phenomenology, rather than being strictly phenomenological. Each paper is crafted to bring the reader ever closer to an understanding of the phenomenon at hand, and to be attuned to the thoughtful construction of texts that not only tell the reader something about the experience of speaking with a SGD but also to take one into the experience so that it may be understood and indeed so it might be recognized whether one is a mouth talker or an augmented communicator. (1) Communication and Literacy for Students with Complex Communication Needs. This article takes the place of what would traditionally be the literature review chapter of a dissertation. As the literature pertaining to the topic has been reviewed in of each subsequent papers, it was thought more valuable to have a chapter that would introduce readers to children and youth who have complex communication needs (CCN) and to the 38 field of augmentative and alternative communication (AAC) in which this phenomenon is situated. This chapter also provides a review of some of the most current thinking in educational practices for students who use SGDs, in an attempt to bring to light some of the critical challenges they face in their school careers (and beyond). This article is scheduled for 2016 publication in the The Inclusive Educator. (2) Phenomenology as the Method of Inquiry This chapter provides readers with an introduction to phenomenological methods as espoused by Max van Manen (2014, 2007). The particular methods and approaches used in this particular study were also described. Finally this chapter presents a reader unfamiliar with appraising a phenomenological text with some guidance to that end. While this chapter is not currently written as a publishable article, I hope to re-craft it as an example of doing phenomenology for the field of AAC. (3) Phenomenological Investigation Into Speaking With A Machine In this paper, I used McLuhan’s notion of extension and amputation as heuristics for exploring themes that emerge from the lived experience descriptions of people whose abilities are extended through the use of Voice Output Communication Aids (VOCAs)1. This paper was one of my first forays into the phenomenon, one that was largely done during the phenomenology and writing doctoral seminar that I attended in 2010-11. The orientation is toward postphenomenology (Selinger, 2006) as it explores humantechnology relations, and how these devices both extend the user’s ability to speak while 1 In my earliest writings on this topic, I was referring to SGDs as VOCAs. While the field of AAC tends to use the terms somewhat interchangeably, in my more recent works I have intentionally chosen the term SGD as these devices would have computer generated (synthetic) voice, not digital recording of the voices of others. While not exclusively the case, it is far more common for the term VOCA to refer to devices (aids) that provide either kind of voice output. 39 simultaneously amputating what might be considered access to meaningful communication through voice. This paper has been published in the proceedings of the Centennial Conference 'McLuhan's Philosophy of Media’ (2012). (4) The Speech-generating Device This article presents an exploration of the SGD as a thing in the Heideggerian tradition (Heidegger, 1971). Borrowing from Heidegger’s writing of the thing, the work of Peter Paul Verbeek (2005), and most particularly Ihde’s writings on human-technology relations (Ihde, 1979), this paper explores the question of what an SGD is as it is called upon to do the ordinary every day task of speaking for one who cannot. In other words, what do SGDs do in the lives of the people who use them? This critical exploration of the transformational impact of SGDs is foundational to understand how they may mediate a person with severe speech impairments being in the world. This paper has been accepted for publication in Phenomenology & Practice. (5) Out of Time in the Classroom This article explores the experience of lived-time for those who speak through an SGD. Lived-time is one of the existentials that can help in understanding the meaning of a phenomenon in the lifeworld of the person who experiences it (van Manen, 2014). van den Berg’s treatise of time is used as a cornerstone for reflection. The work of Higginbotham and his colleagues is further drawn upon to provide insights and background to the phenomenon. The focus is to provide some understanding of the real demands of time placed upon young people who speak with SGDs, particularly the experience of time in the context of schooling. 40 The paper has been submitted to Communication Disorders Quarterly, and while the response was favourable, the editors asked that given its length that it be made into two papers. This will be attended to subsequent to the completion of my doctoral program. (6) What does the Non-speaking Child Say? This chapter focuses most particularly, although not exclusively, to the existential of lived relations. Unique in this chapter is a review of many of the published works from which anecdotes have been derived. It also presents reviews of studies that have sought perceptions of SGD use by adults who use them, by parents of children that use them, and by educators. While perceptions of device use are different from the lived experience of device use, these papers do help to establish what is currently known about what people think about SGDs. The chapter aims at going beyond the perceptions to provide educators and other professionals with a glimpse into the phenomenon of speaking with an SGD in the lifeworld of a child. It concludes with the presentation of a key findings that, while not strictly adhering to my chosen methodology, will hopefully make the chapter accessible and useful for those who may come into contact with a non-speaking child in the classroom. This chapter has been published in the book Advances in Special Education Technology (Edyburn, 2014). (7) A call for pedagogical listening. The final chapter of this dissertation may be read as implications for practice in the broadest sense. This chapter calls for a pedagogical orientation to the phenomenon and to the children and youth who use SGD to communicate in their daily lives. Looking to the orienting methodology of phenomenology of practice (van Manen, 2014) and borrowing 41 heavily from what has become known as postphenomenology (Rosenberger & Verbeek, 2015; Selinger, 2006) a call is made to professionals to seek the lived experience of those who use SGDs so that their inter-actions with them may come from both a cognitive or science focused knowledge base as well as an empathetic or personal understanding. This call is addressed not only to speech language pathologists and educators but also to the rehabilitation engineers who are tasked with developing the technologies themselves. This chapter has not been written for publication but it is hoped that it may be subsequently re-worked for publication in Assistive Technology: The Official Journal of RESNA. 42 Chapter 3: Communication and Literacy for Students with Complex Communication Needs Introduction Most of us take the ability to speak for granted. To speak is to have a voice. To be understood by others through the use of our voice. From the time most of us are very young children, our primary means of communication is through speech. We talk with our friends. We whisper secrets. We shout and cheer at the top of our lungs and make our voices heard. We use our voice to share stories across space, and to tell our stories across generations. But what if you couldn’t speak, or use your hands? How would you communicate? How would you prove that you could learn, that you have an opinion that you matter? (Ellis & Ellis, 2011). As educators we may assume our students come to us with the ability to talk - to express themselves to us through speech. Spoken language is integral to almost every life experience, most particularly to schooling as “the basic purpose of school is achieved through communication” (Cazden, 2001, p. 2). Having speech and language (communication) skills allows children to express to others their wants and needs, and even more critically it allows them to interact socially with adults and peers (Locke, 1998). Speech and language provide the foundation for conceptual development and the foundations for more advanced language and literacy skills (Light & Drager, 2007). But consider a child with complex communication needs, a child who can hear what is being spoken around them, but who, due to an unruly body, cannot coordinate the breath, sound and movement necessary to produce intelligible speech of their own accord. A child who in order to share their thoughts and opinions with the world must learn to express themselves through augmented means. 44 (letters and words) symbols to select and compose messages for others to see and/or read, and/or electronic or computer based speech-generating devices that speak the composed selected messages out loud. Unaided communication refers to methods of communication that do not involve any additional materials. Examples of unaided communication methods include the use of natural speech, gestures and manual signs or signals. While sign language, for example American Sign Language (ASL), can be included as a method of AAC, it is important to note that sign language is exactly that, a language. If one is going to expect a child with complex communication needs to use sign language as their primary modality, this should take place in a context where it is also used by other people in the child’s community (parents, teachers, peers, etc). More will be said on this topic when discussing the importance of immersive language learning. Who are students with Complex Communication Needs? The population who may benefit from both AAC and assistive technologies (tools for aided AAC) to support communication and language development are referred to as having complex communication needs (CCN). Perry, Reilly, Cotton, Bloomberg, and Johnson (2004) provide the following useful definition of complex communication needs: People who have complex communication needs are unable to communicate effectively using speech alone. They and their communication partners may benefit from using augmentative and alternative communication (AAC) methods, either temporarily or permanently. Hearing limitation is not the primary cause of complex communication need. (p. 261) There are many important elements to note in this definition. AAC systems can augment existing speech skills. Some people who have CCN may indeed speak. Some may be very hard 45 to understand and therefore use AAC supports to communicate with unfamiliar partners or in certain contexts. For example, a child with severe apraxia of speech may use a letter board to help people understand what they are saying in some instances, and a speech generative device when they are speaking to unfamiliar people or to a group of people. Some children with CCN do have a few words that they can speak, some may refer to these children as “minimally verbal”. These few words, however, will not be sufficient to meet their daily requirements for interacting with friends or engaging in learning experiences. AAC supports will also be important for these children. For some people AAC can provide an alternative to speech, for example people who cannot for various reasons produce intelligible speech. This may be because of severe cerebral palsy, or the result of an acquired condition such as amyotrophic lateral sclerosis (ALS), for example Steven Hawking, or it may be due to other conditions such as autism. As more is being learned about people with autism, there is evidence showing that there is a relationship between autism and apraxia of speech (Tierney, Mayes, Lohs, Black, Gisin & Veglia, 2015). While this relationship exists there are some people with autism who cannot speak (Rudy, 2015). There is emerging evidence that the provision of AAC systems, and in particular voice output systems (for people with autism plus CCN) not only help them communicate but such systems also have a positive effect on reducing challenging behaviour (Ganz et al, 2014; Kasari et al, 2014). AAC supports speech (and language) development. AAC supports may be required for a lifetime or may only be needed for a shorter time. For a child with severe cerebral palsy AAC supports may be their primary means of communication throughout their lives, as their bodies may never allow them to coordinate the 46 various muscle movement to produce intelligible speech. For some children, AAC supports will be a temporary scaffold to use while they are acquiring the ability to be understood through speech. A common myth is that using AAC, especially for young children, will delay their speech development. In fact studies show that the use of AAC actually improves speech development where possible, and providing and supporting AAC improves language development in all cases. Schlosser and Wendt (2008) undertook a systematic review of the research in the area and found that the best evidence indicated that AAC interventions do not have a negative impact on speech production in children with autism. Romski and Sevick (2005) looked specifically at the provision of AAC supports to very young children and also concluded that providing AAC supports to young children do not delay speech and may enhance development of spoken communication. AAC is a joint venture. Perry et al.’s (2004) definition points out that AAC involves both the person with complex communication needs and their communicative partner(s). Communication is a dynamic process involving two or more partners. People with CCN must rely on the skills of others to help them be a part of a conversation (Iacono, 2014, p. 83). Due to their unique and complex communication needs, the roles of communication partners and their need for training are particularly important (Goldbart & Caton, 2010). The importance of instruction for communication partners is widely recognized in the AAC literature (Binger, Kent-Walsh, Ewing & Taylor, 2010; Bruno, 1997; Kent-Walsh, Murza, Malani & Binger, 2015). While the focus often seems to be on the person who requires AAC, without partners who understand how the AAC system works, how to model and support its use in context, and the opportunities and challenges the system involves for the user, success in using 47 the system will be limited (Light, 1998). Research shows that for many individuals with CCN, typical interaction patterns include taking relatively few turns in a conversation, infrequently initiating or even responding in an interaction, asking few questions, and using a restricted number of linguistic forms (Chung, Carter, & Sisco, 2012a; De Bortoli, Arthur-Kelly, Mathisen, Foreman & Balandin, 2010; Myers, 2007) Kent-Walsh, Murza, Malani and Binger (2015) undertook a meta-analysis of the effects of communication partner instruction on the communication of individuals using AAC. They found that communication partner instruction has positive effects on communication performance of individuals using AAC, and that communication partner interventions can be effectively implemented across a range of communication partners, including caregivers, educational assistants, parents, peers, and teachers. The authors conclude that partner instruction should be viewed as an integral part of AAC assessment and intervention. Hearing impairment alone is not the issue. While people with CCN may indeed have hearing impairment, hearing impairment alone does not constitute complex communication need. People who are hearing impaired may use AT such as hearing aids to help them learn language and communicate effectively. People who are Deaf may learn ASL. People with hearing impairment may indeed become bi-lingual, communicating in both ASL and English (for example) even though their language learning and use is in one primary modality. But for people with CCN it is more complex than just requiring AT or learning another language in which to communicate with other speakers of that language. For people with CCN they are getting language input in one modality (spoken language) while they are having to learn to express themselves in another (AAC symbols or text). This makes learning to understand and use language much more complex. While people who speak or use 48 sign language to communicate must become competent in the linguistic structure of their language, people with CCN who use AAC must gain competence in the auditory language that is spoken all around them, while also gaining competence in an aided language system to express themselves. Janice Light (1998) suggests that people who use AAC must develop this dual track linguistic competence as well as social competence (pragmatics), strategic competence (what they can say with the “words” they have in their system), and operational competence of the aided system. All communicators must develop linguistic and social competence (Hymes, 1972) but people with CCN who use AAC have additional competency burdens to become effective communicators. So who are these students? In her exploration of what it means to have complex communication needs, Teresa Iacono (2014) suggests that due to the “unfair nature of disability” (p. 82) challenges often come in multiples. Students in our classrooms with CCN may also have vision impairment, hearing loss, physical challenges, intellectual disabilities or some combination of any number of impairments that impact their lives and learning. As the complexity of the disability increases, so does the complexity of communication needs, finding an appropriate alternative system (Iacono, 2014, p. 83), and adequately preparing their communication partners. In the early years of AAC the primary recipients of AAC systems and devices were people with severe physical limitations due to conditions such as cerebral palsy. Today there is a growing understanding that children and youth with developmental disabilities, autism, and those who have multiple disabilities may also require AAC in order to support the development of their communication and language abilities (Ganz, Earles-Vollrath, Heath, Parker, Rispoli & Duran, 2012; Wilkinson & Hennig, 2007). There is also a growing understanding of the value of 49 AAC supports and services for infants and toddlers at risk of developing complex communication needs (Romski, Sevcik, Barton-Husley, & Whitmore, 2015). While the number of children with CCN is relatively small (Binger & Light, 2006; Matas et al, 1985), there is a growing understanding that many of the students who we used to consider non-verbal or minimally verbal should be provided with AAC systems and supports in order to help them communicate, grow their language, and support their literacy development. Foundational beliefs Providing communication and literacy for every child is based on the foundational belief that every child communicates, every child is capable of learning a symbolic language system, and that every child is capable of learning at least emergent literacy skills. When the field of AAC was first developing it was believed that a child (or adult) needed to demonstrate certain skills and/or abilities to be seen as a “candidate” for AAC. For example, in the early 1980s the belief was that a child must demonstrate at least Stage 5 sensorimotor intelligence, and if they could not, AAC systems were not recommended (Glennen & DeCoste, 1997). Today, in contrast, we understand that any person with complex communication needs is a candidate for AAC. In fact, research clearly shows that the provision of AAC supports and services can benefit every child with CCN (Ganz, 2015; Romski & Sevcik, 1996). Why the Programs of Study (curriculum) matters. For many years in the field of special education there was a belief that some students would need a specialized curriculum, often referred to as functional or life skills. With the movement in the United States, in particular, to every child needing to make progress in the general education curriculum, this notion of a specialized curriculum has been brought into question. While in theory a specialized or personalized curriculum may not appear problematic, 50 the reality is that such a curriculum often lacks continuity because its content depends on the preferences and philosophies of educational staff (Beukelman & Mirenda, 2013). When a teacher creates a new individual plan every year that is not based on the programs of study, there is a great chance that the student’s education may be lacking the scope and sequence, and recursive structure that is built into a well designed curriculum. Many times when children are “not in curriculum” they are at risk of developing splinter skills. For example, in the world of special education there has been a tendency to teach students with more significant disabilities mastery of one isolated skill, such as memorization of the alphabet or list of sight words in the hope that they may appear more age-appropriate (Kraderavek & Rabidoux, 2004). The special education literature is replete with studies demonstrating that individuals with significant disabilities can learn to identify sight words in isolation (Browder & Spooner, 2006), yet there is question about whether these skills contribute to future conventional reading and writing abilities. Current thinking suggests that students should be actively involved in constructing their understanding of print, language, and the connection between the two by interacting with more literate others across multiple contexts for multiple purposes (Erickson, Hatch & Glendon, 2010). This is exactly the kind of thinking that is involved in the development of the current English Language Arts Programs of Study in Alberta (see http://www.learnalberta.ca/ProgramOfStudy.aspx?lang=en&ProgramId=404703# ) where it states: Language development is continuous and recursive throughout a student's life. Students enhance their language abilities by using what they know in new and more complex contexts and with increasing sophistication. We now know that this is true for every child including students with CCN and significant developmental disabilities. While student with CCN may take longer to be successful 51 with symbolic communication, language, and literacy, research shows that with high expectation, comprehensive instruction and the support of assistive and communication technology, even children labeled as being intellectually disabled acquire literacy skills and demonstrate intelligence beyond what would have been predicted by their test results (Bilken & Cardinal, 1997; Erickson, Koppenhaver, & Yoder, 2002). Presuming Competence. Without doubt the most important thing we can do to help every child communicate and gain literacy skills is to presume competence. Presumed competence, according to Bilken and Burke (2006) is a kind of contract between the teacher and student to choose the most optimistic stance possible. We presume competence when we provide a child with CCN with an AAC system that includes a robust language system instead of a limited number of words. We presume competence when we provide a child with CCN and developmental disability with comprehensive literacy instruction beyond sight word memorization and copying text. We presume competence when we provide alternative pencils to children with physical disabilities who cannot pick up a pencil, so they may engage in scribbling and other emergent literacy activities. It is commonplace for parents and educators to approach children without disabilities as competent. Teaching literacy is carried out within the expectation that most, if not all, children are capable of developing communication and literacy skills (Bilken & Burke, 2006). Traditionally for too many students with disabilities (including many with CCN) we may have presumed incompetence and forced the person with a disability to prove they can before they are provided the opportunity to try. Donnellan (1984) suggests that presuming competence is the least dangerous assumption: Given that the long-term goal of education is to ensure that students acquire the skills necessary to be able to live, work, and recreate as independently as possible as adults; 52 and given that there are a variety of educational means or strategies currently available for instruction; and given that, through the lack of conclusive data, we are currently forced to make assumptions about relative impact of various strategies on the long-term goals, which assumptions will have the least dangerous effect on the likelihood that the goal will be attained. (p. 148) Yet is seems educators may fall into the presumed incompetence model where issues of readiness may stop educators from providing rich and challenging experiences that will support students with CCN to become more competent. The readiness paradigm might lead educators to hold students back from language and literacy experiences until they can demonstrate certain skills and abilities. Yet even today there is little evidence to support that students with disabilities learn differently than any other student. We certainly do not make students without disabilities prove they can learn before we let them try, therefore as Donnellan (1984) suggests the least dangerous assumption for every student is to presume they can learn, given robust communication supports and comprehensive literacy instruction. Communication, Language & Literacy For people with disabilities, the consequences of not being able to speak or not being understood are far-reaching and often serious. Their complex communication needs require urgent attention. (Iacono, 2014) Communication matters! Communication is both a basic need and a basic right of all human beings (American Speech- Language-Hearing Association, 2014; United Nations, 2008). Any consideration of quality of life must take into account the degree to which individuals can effectively communicate with, and thus be full participants in the community in which they live (Brady et al., 2016). Communication is the transmission of a message or information from one to another person. Communication may or may not be intentional. Someone’s facial expression may 53 communicate unintentional information to another person when one is trying to keep a secret or is telling a lie. Communication for all of us, including those with CCN, may involve conventional or unconventional signals, may take linguistic or non-linguistic forms, and may occur through spoken or other modes (Brady et al., 2016). Communicative behaviours begin as soon as a child is born. Parents respond to the movements, coos and smiles or tears of their infants, attributing meaning and giving meaning. A parent may say to a squirming child, “oh I see you are uncomfortable”, and the child may then learn a word for the feeling of their body that caused them to move. A parent may see a young child rubbing their eyes and tell them, “I think you are tired, time for bed”. In this instance it is usually not the case that the child was trying to communicate that message, but their body movements spoke for them. Pointing may be the singularly most important gesture for young children both as an expressive means of communication (look at that, I want that) and to gain receptive understanding of the world (when they point mommy labels what they are pointing at). Spoken language develops as these non-verbal methods are being used and responded to by the speakers in the child’s world. While there is evidence that children come to the world with certain predispositions that enable them to become fluent in language, if they are not in a language-using environment, they will not develop this capacity (Bransford, Brown, & Cocking, 2000). While all children may be primed to learn language, they cannot do so in a language vacuum. Language does not grow out of silence (Zangari, 2016) and this may be particularly challenging for children and youth with CCN. Aided Language Stimulation. 54 Children with CCN may not be able to provide or respond to the non-verbal and early verbal modes that typically developing children do. They may be challenged to point, or follow a point to jointly attend to something. They may not be able to produce verbal word approximations that will be responded to by those around them as meaningful. They may be developing in a world that is bereft of the natural modeling and responding that is provided to children who will become speakers (or signers if they are deaf growing up in an ASL environment). While adults and peers speak to children and youth with CCN, it is not yet common to have people communicate with them using an aided language modality. Yet, just as young children must be exposed to speaking models (or signing models) children with CCN have to be exposed to AAC before they can be expected to use it themselves (Sevcik & Romski, 2002). There is now a substantive body of evidence supporting the idea that adults (parents, teachers, SLPs, assistants) should be modeling the use of a child’s AAC system just like we model the use of our oral language system for typically developing children (Dada & Alant, 2009; Harris & Reichle, 2004; Jonsson, Kristoffersson, Ferm, & Thunberg, 2011). Typically developing children learn language not only through structured explicit opportunities in supportive interactions but also implicitly, through over-hearing and observing language in their environment (Smith, 2015). Children with CCN are no different in how they learn. Yet, despite this robust evidence base, aided language stimulation or modeling of the AAC system is not often the norm in practice. Children and youth with CCN are expected to learn to use to communicate in symbols with little or no exposure to seeing others use these systems communicatively. And too often, if children with CCN do not quickly express themselves using the AAC system, the determination that they are not capable of using it may be made. When one 55 considers that a typically developing child may take up to two years of being immersed in speech before they speak a word, it is rather strange for us to expect a child with a disability (especially a cognitive disability) to use an AAC system expressively with minimal to no exposure. Talking to children with CCN using AAC systems to let them know how you are interpreting their communication (intentional or not) can help them to learn about the communicative process in general, and about symbolic methods that can lead to increased communication and importantly to language development. Communication is more than making choices and requests. A very common way that AAC supports are introduced to students with CCN is to provide a symbol or series of symbols that the student can use to make requests (e.g. PECS, choice boards, etc). While expression of wants and needs is one of the functions of communication and language, it is for most of us far from the most important one. Consider the last time you had a conversation with a friend or perhaps even a new acquaintance. Did you make requests or express your wants and needs? Perhaps, but it is far more likely that you asked some questions, answered others, made comments, shared information and/or shared your feelings. It is critically important that we provide opportunities for students with CCN to engage in the full range of communicative functions using their AAC systems. This means modeling of, and providing for, the full range of communicative functions that all children engage in as they are learning to be competent communicators: answering questions, asking questions, making comments, giving directions, sharing feelings, sharing information, protesting, refusing and making requests. Yet despite this, research suggests that for students with disabilities we are focusing almost exclusively on teaching students with speech-generating devices requesting skills (Jenkins Rispoli, Franco, van 56 der Meer, Lang, Pimentel & Camargo, 2010). This may be because teaching commenting and other social functions is more difficult (Brady et al., 2016) but if we expect children and youth with CCN to become competent communicators and to gain the language skills they need to participate in learning, it is critical that we support them in developing all functions of communication. It is also important that we provide opportunities for children and youth with CCN to refuse, to say no (Loncke, 2014). This skill is particularly important to support development of a sense of self, agency and autonomy. It also may be an important skill to keep them safe. People with CCN may be particularly at risk of abuse (Sobsey, 1994), so learning to say “no”, along with having the ability to share real information with others, may be some of the most important life skill we can provide. Language is the key to literacy. Oral language is the foundation of literacy. Through listening and speaking, people communicate thoughts, feelings, experiences, information and opinions, and learn to understand themselves and others. Oral language carries a community's stories, values, beliefs and traditions (Alberta Education, 2000). Children who need AAC in order to express themselves in and through language are often at a significant disadvantage as they enter into school. Unlike speaking children who come to school ready to build upon the foundation of their oral language skills, many (most) children with CCN do not come to school with means of expressing (oral) language as they have not yet been provided with an AAC system upon which their language can be built. They have been immersed in a spoken language environment but must develop and use an expressive language system in another modality, one in which, as previously noted, they may receive limited input 58 supported through modeling and intentional teaching of vocabulary in and across multiple contexts. Core vocabulary. A relatively recent approach to providing language intervention for students with CCN who may not have a robust language system is to provide them with access to core vocabulary across a variety of contexts. Among the many changes that the AAC field has experienced in the last decade is the notion that core vocabulary is (or should be) an integral part of any AAC system. We grew to understand the limitations of AAC supports that consist primarily of nouns and descriptors, realizing that those kinds of communication displays restricted our clients to requesting and labeling. (Zangari, 2013) A core vocabulary is comprised of the words that are used most commonly in expressive communication (Yorkston, et al., 1988). Fallon, Light & Kramer Page (2001) found that for typically developing pre-schoolers, the 250 most frequently occurring words accounted for 89% of the total sample of language used by the children. In fact, a mere 25 most frequently occurring words were found to account for 44% of the entire sample. Their findings and the finding of others who study word use in context suggest that a relatively small set of words make up the bulk of speech, and that these core words can be used across multiple context and for multiple purposes (DO IT, WANT IT, GO THERE, NOT GO THERE, etc). Fringe vocabulary, which is also required in a complete language system, involves the words we use to communicate about specific topics in specific contexts (e.g. scissors, paper, and marker for art class; fork, drink, and napkin for meal time). Zangari (2013) notes that teaching words like it, do, and not is a lot different than teaching words like cookie and bubbles. However, throughout the day there are 59 many more opportunities to model, use and teach these core words than using the once pervasive activity boards made up of nouns. Core vocabulary also lends itself to many repetitions of use of vocabulary in many different contexts and with many different people. This is the kind of learning that supports understanding (Erickson, 2015, personal communication). Literacy For a person who uses an AAC system to be able to construct novel messages outside those that are stored in their device, they must have some literacy skills. Yet, students with CCN are at risk in multiple areas of development, including the development of literacy skills (Light & Drager, 2007; Smith, 2005). In 2000, David Koppenhaver challenged the field of AAC to embrace the notion that literacy is included within AAC. If “communication is the essence of human life” (Light, 1997), then literacy is the essence of a more involved and connected life. (Koppenhaver, 2000, p. 270) He points out that AAC users communicate through composing – that is they create texts either by stringing together a series of picture symbols or by stringing together letters and words. Sometimes these texts are then spoken aloud through the use of text-to-speech software, sometimes they are understood (or not) by the communication partner who is following along in the text (message) construction. Literacy is in AAC (Koppenhaver, 2000) and literacy development is vital to AAC users (Hetzroni & Tannous, 2004; Erickson, Hatch & Glendon, 2010; Light & McNaughton, 2014; Smith, 2005). Literacy is a critical goal for children and youth with CCN for a number of reasons: 1. Literacy is a foundational skill for learning (Alberta Education, 2000). 2. Without the ability to spell, even the most advanced AAC users may not be able to say what they want due to the limitation of vocabulary that is available to them on their device (Look Howery, 2015). 60 3. Opportunities for meaningful and interactive participation in inclusive educational, work, or social environments are severely restricted when AAC users cannot produce or interpret texts (Koppenhaver, 2000). 4. Literacy affords access to the social media experiences that are integral to the lives of children and youth in the 21st Century (Hetzroni & Tannous, 2004; Light & McNaughton, 2014). There is increasing evidence suggesting that even children and youth with CCN and significant intellectual disabilities can learn literacy skills at the emergent level (Erickson, Koppenhaver, Yoder & Nance, 1997; Erickson, Glendon, Abraham, Roy & Van de Carr, 2005; Fallon, Light, McNaughton, Drager & Hammer, 2004). For children with CCN, emergent literacy skills may take longer to develop and will take intentional and explicit instruction. Students who are at an emergent level of literacy are working to understand functions of print and print conventions, phonological awareness, and alphabet knowledge (Erickson, Hatch & Clendon, 2010). Students with CCN may also require time spent in shared reading, which involves active interaction with/in the reading experience. In order to be actively engaged in emergent literacy activities, the modeling and use of AAC systems is critical. Students cannot talk about the books, ask questions about their learning, comment and share about their explorations of text without symbolic representation of language using their AAC system. Research also clearly demonstrates that students with significant intellectual disabilities can make progress in conventional literacy when they have access to comprehensive instruction (Erickson, Hatch & Clendon, 2010). Yet the fear is that students with CCN rarely have access to comprehensive instruction. When they do receive conventional literacy instruction, it tends to involve mastery of lists of sight words or skills taught in isolation (Erickson, Hatch & Clendon). 61 Koppenhaver and Erickson (2007/2015, personal communication) argue that daily instruction that includes use and modeling of AAC systems, guided reading, word study, writing and selfdirected reading is critical for students with CCN to develop conventional literacy skills. Literacy is the key to autonomy. The question of which symbol set will provide a student with CCN the ability to generate autonomous authentic messages often arises, especially now that so many AAC applications (apps) with various language sets are available at relatively low cost. The answer is that there is really only one truly generative set of symbols, and that is the letters of the alphabet (26 symbols in the case of the English language). Until a person with severe speech impairment is able to spell what they need to say, until they are literate, they are limited by the words they have in their device. Once children with CCN can use the alphabet, even if they are not proficient spellers they can generate their own messages rather than being limited to choosing from the words and phrases that are provided for them by others. Selection of vocabulary has long been a challenge in the field of AAC (Beukelman & Mirenda, 2013). Today with the understanding of the importance of aided language stimulation (modeling the child’s language system) the field is beginning to recognize that even emergent communicators need to have access to a language system and see this system in use. Until the child is literate, the words and phrases are always given to them, not truly acquired in the way a typically developing child would acquire vocabulary. Becoming literate, understanding how to combine those 26 symbols (letters) to make understandable words/word approximations is the key to having an autonomous voice in the world. When the field of AAC was emerging 30 years ago, the focus was primarily on maximizing the communication of children and youth with CCN in face-to-face interactions. 62 Today there is increased recognition that communication needs extend to written communication to meet the demands of school; share media experiences such as Facebook, establish membership in peer communities through texting, expressing updates and opinions through Twitter, and the like (Light & McNaughton, 2012). Literacy means literacy. A common practice has been to provide access to information through symbolated text and access to writing through use of AAC systems. What we now know is that providing symbols with words, while perhaps helping students to gain access to the meaning of the text, does not help them learn to read (Erickson, Hatch & Clendon, 2010). In fact, there is evidence to show that putting symbols with words interferes with childrens’ literacy learning as they pay attention to the symbol not the text (Erickson, Hatch & Clendon, 2010). Another common strategy to help students with CCN write is to have them use their communication devices as keyboard emulators. That is, they send words to a document by choosing symbols on their devices. While this has the appearance of writing (i.e. the text appears as text) the student is at best practicing communicating with their device, and perhaps at worst coming to the conclusion that they and/or their teachers do not see the need to spend time and effort learning to write in conventional methods. But without the ability to spell, people with CCN can only say or write with the words they are given. This will not give them the ability for autonomous speech, or get them actively into the world of social networking (Facebook, Twitter, etc.), both of which are so important in their developing into active and engaged citizens in today’s technological world (Additional information on supporting literacy development for students with CCN and/or significant disabilities studies can be found at: https://www.med.unc.edu/ahs/clds ). 63 Best Practices in AAC Supports The historical context in which educational teams have operated meant that students with CCN were often not viewed as capable learners upon entering school. Literacy may not have been a significant component of their special education programs, or certainly for their ongoing school careers. It was not understood that children who could not speak were capable of learning and applying phonics. Moreover, skills were often taught in isolation through repetition (massed trials) and feedback (Erickson, Koppenhaver & Yoder, 2002). It takes a team! The AAC literature clearly supports the establishment of a multi-disciplinary team to provide AAC supports and services (Beukelman & Mirenda, 2013; Loncke, 2014; Lund & Light, 2007; McSheehan, Sonnenmeier, Jorgensen, & Turner, 2006). For children and youth who use AAC systems, the educational team must work together to integrate an often complex array of technologies used for learning, mobility, and classroom participation (Erickson & Koppenhaver, 1995; Soto, Muller, Hunt, & Goetz, 2001; Stoner, Angell & Bailey, 2010). The ability of teams to successfully collaborate has been linked to positive long-term outcomes for students with complex communication needs (Lund & Light, 2007). Bailey, Stoner, Parette and Angell (2006) found effective teaming to be a primary facilitator of effective AAC device use by students in junior high and high school. Collaborative practice involves more than having a group of professionals linked together as a team. Teams that supported effective AAC use functioned well together, communicated frequently, and were focused on increasing the communication skills of their students. The majority of research suggests collaborative relationships are highly valued 64 and even encouraged. Despite these findings, the reality in the classrooms suggests that successful partnerships often elude educational teams (Fallon, 2008). Teaming often takes the thing that is most challenging for educators to find, time. But without time to develop teams, work as teams, and problem solve as teams, the child who needs AAC to communicate, participate and learn may never get the instruction, supports and services they need to succeed. This participation and learning time is something these students may lose forever. Parents and peers are also critical members of the team. Research suggests that too often parents are not actively engaged in decision making around AAC and/or not supported helping their child learn the system (Bailey, Parette, Stoner, Angell, & Carroll, 2006; Cress, 2004; Goldbart, & Marshall, 2004). Parents have critical knowledge of their children that must be sought in developing an AAC system. Also, much of the ongoing responsibility of ensuring use of, and support for, AAC systems falls to parents and family members. There is a growing body of literature on the importance of peer interactions for children and youth with CCN, and how to foster these critical social interactions (Chung, Carter, & Sisco, 2012a; Chung, Carter, & Sisco, 2012b). While the evidence to date suggests that students with CCN engage with paraprofessionals and other adults far more than with their peers, there are promising practices such as intentional engagement of peer supports (Carter, & Sisco, 2012b) and creation of communication circles (Musselwhite, 2013) that may help children and youth with CCN to more actively and successfully engage with their peers. Today we know that with the intentional provision of teaming, time, and appropriate instructional practices that “no student is too anything to be able to read and write” (Yoder, 2000. DJ-Albenet Lecture, ISAAC). It takes time! 65 By 18 months of age babies have heard 4389 hours of spoken language, yet we do not worry if they have not spoken even one word (Korsten, 2011). If AAC learners only see symbols modeled for communication twice weekly for 20-30 minutes, it will take 84 years for them to have the same exposure to aided language as an 18 month old has to spoken language (ibid). It takes time for any child to learn a language, understanding comes first (receptive language) and use (expressive language) follows years of exposure and exploration in form, function and purpose. For children and youth who need to use AAC supports and strategies expressively we often expect that they should be using their device or their language system right away, yet if one considers the context this in fact seems rather absurd. We need to give children time to learn the system and time to explore using the system, just as we do for typically developing children. And given the complexity of learning a second language system (the AAC system) with the additional cognitive and operational demands of speaking with AAC it seems we most likely need to give our students with CCN much more time to explore and understand their systems, certainly not less. The same point must be made for the time it may take students with CCN to develop their literacy skills. Expertise occurs only with major investments of time for any learner, no matter what abilities or disabilitites the person brings to the task (National Research Council, 2002). While every child can learn, it may take some longer, sometime a great deal longer than others. Given many issues that they may face, not the least of which may be inadequate instruction, it may take children and youth with CCN many years to gain emergent literacy skills and many years after that to become conventional readers and writers. There is some evidence that for some students with CCN their greatest gains in literacy may come in their early teens (Erickon, 2015, personal communication). This makes sense given that they may have been 66 spending much of their lives learning to use their AAC systems, and learning language. Yet, too often by the time students with CCN are in junior and senior high the focus has moved from literacy instruction to life skills. Given the primacy of literacy as a life skill for a person with CCN, educators and SLPs must assume competence and believe that it is never too late to provide comprehensive literacy instruction to any student, no matter what challenges they may have. Teaching involves setting the context for learning. Precisely because of the history and power of behavior analysis in shaping the field of special education, professionals have not given a great deal of thought to how students with severe cognitive disabilities think. Kleinert, Browder & Towles-Reeves (2009, p. 305) Much of how we teach children and youth with CCN, especially those with developmental disabilities, is at variance with how we teach typically developing children. The world of special education has relied heavily on a behavioral paradigm, whereas theories on how children learn, especially how they learn language have refuted strict behavioral models in favor of cognitive and social learning theory. In the so called general education paradigm we understand that children need to attach the new to the known, they learn through doing, and that learning is a social activity that is best supported by a more knowledgeable other (Miller, 2002). While in the past, primary emphasis was on drill and practice, modern theories of learning and transfer retain the emphasis on practice, but they specify the kinds of practice that are important and take learner characteristics (e.g., existing knowledge and strategies) into account (National Research Council, 2002). The research suggests that “arranged contrasts can help people notice new features that previously escaped their attention, and learn which features are relevant or 67 irrelevant to a particular concept” (National Research Council, p.60). While massed trials, and repeated exposure with choice making (e.g., food choices, clothing choices) and communication introduced through requesting have long been staples in the educational menu provided to students with significant disabilities, recent information suggests this may not provide the conditions for learning that are required for success. We now understand that learning happens when we learn patterns through experience, not isolated drill. We also know that slight variations in a known pattern are likely to cause a learner to pay attention, something that is new but not so new that we cannot assimilate it into our current schema (Burkhart, 2015). A confirmation of this comes from a recent study exploring perceptual learning in people with autism. It not only confirms that the benefits of slight variation in learning stimulus is beneficial, but that repetitive presentation of the same stimulus to high-functioning adults with ASD actually reduces their efficiency in learning (Harris et al., 2015). Learning happens best when children are supported by more capable others who respond to where they are at and provide experiences and scaffolds that help them extend their understanding through repetition with variety (Erickson & Koppenhaver, 2015, personal communication). There is no magic technology. Mere access to the content is inadequate as an AT unless that access is mediated by instructional design supports appropriate for the specific disability of the user. (Boone & Higgins, 2007, p.138) Perhaps, especially into today’s world of pervasive technologies, it seems that the most important thing is to provide a child with CCN with assistive technology and most particularly a speech-generating device of some ilk. While access to appropriate assistive technology tools and access to voice output systems may indeed have significant benefits to students as they engage 68 with print and books and as they are provided opportunities to share their voices with others (Erickson, Hatch & Clendon, 2010; Romski & Sevcik, 1996) technology alone will do little to help a child learn to communicate, learn language and become literate. Learning to use assistive technologies and AAC devices takes effort and time, there is no magic (Higginbotham & Caves, 2002). But the research clearly shows that technology in conjunction with a comprehensive approach can make a huge difference in the lives of people with CCN. The statement made 20 year ago by the Alliance for Technology Access is as important or perhaps more important in today’s world of apps and high powered tablet computers. The success of technology has more to do with people than machines. 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Augmentative and Alternative Communication: Models and applications for educators, speech-language pathologists, psychologists, caregivers, and users. San Diego: Ruffin. Look Howery, K.L. (2015). Speech-Generating Devices in the Lives of Young People with Severe Speech Impairment: What Does the Non-Speaking Child Say? D. L. Edyburn (ed.) Efficacy of Assistive Technology Interventions v.1, Emerald Insight. Lund, S.K. & Light, J. (2007). Long-term outcomes for individuals who use augmentative and alternative communication: Part III – contributing factors, Augmentative and Alternative Communication, 23:4, 323-335. Marshall, J. & Goldbart, J. (2008). ‘Communication is everything I think.’ Parenting a child who needs Augmentative and Alternative Communication (AAC). International Journal of Language & Communication Disorders, 43 (1), 77-98. 78 Matas, J., Mathy-Laikko, P., Beukelman, D.R., & Legresley, K. (1985). Identifying the nonspeaking population: A demographic study. 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Vocabulary Development For AAC Learners: Effective Instructional Practices. Webinar for Alberta Education Low Incidence Provincial Wide Supports. Zangari, C. (2013, April 6). Teaching Core Vocabulary. Retrieved from http://praacticalaac.org/strategy/teaching-core-vocabulary/ . 82 Chapter 4: Phenomenology as the Method of Inquiry In all research, including in traditional (experimental or more positivistic) research, there comes a moment when the researcher needs to communicate in writing what he or she has been up to (van Manen, 2014, p. 363). The purpose of a methods chapter is to inform the reader about how the study was undertaken while providing some evidence that the path was well constructed and sound. In the fields of special education and rehabilitation medicine the reader of a dissertation methods chapter may expect a particular structure. In human science inquiry the purpose of a methods chapter is similar – to communicate with others what the researcher has been up to – but the discussing or sharing the methodological procedures or perhaps better stated pathways, may well deviate from what is commonly expected in the domains of science, education and social sciences. Phenomenological scholars such as Heidegger and Merleau-Ponty warn of an over reliance upon or expectation of a set of standard strategies and techniques. Heidegger (1982) suggests that each inquiry demands a unique approach in order to provide access to the objects (phenomena), and that once used that approach becomes obsolete. Merleau-Ponty (1958/2002) seemingly contradicts these statements by suggesting that there is some method to phenomenology, indeed he tells us that “phenomenology is only accessible through a phenomenological method” (p.viii). So what can be made of this? You do the study by doing it? And once you have done it, is that approach obsolete, of no further value? This all may seem rather strange. Yet perhaps not strange at all if one recognizes that phenomenological studies do not seek to be replicated or provide definitive answers to questions. Phenomenology seeks to understand not to explain but to help elucidate understanding. Yet, that understanding will always be tentative and incomplete. Having studied a phenomenon in one way or perhaps even several ways one may have arrived at some deeper understanding, but there 83 is always something more to learn – to take a new approach to the question, to look at the thing in another way. Each looking will give us further understanding but as we look again we will inevitably find something more that needs to be explored. How then to explain to others a method that seems without methodology? Van Manen (2014) suggests: it may be best to think of the basic method of phenomenology as the taking up of a certain attitude and practicing a certain attentive awareness to the things of the world as we live them rather than as we conceptualize or theorize them, and as we take them for granted. (p. 41) It is the goal of this chapter to communicate in writing the ways that I have taken to gain glimpses of understanding into what it is like to speak with/through a speech-generating device (SGD). These glimpses are shared in four papers that compose the main body or results section of this dissertation. Each paper attempts to look at the phenomenon of speaking with a SGD using a somewhat varied lens, while adhering to the phenomenological method. I will share how I have attempted to enter into a phenomenological attitude and practice attentive awareness to the phenomenon of speaking through a device in order to clear away that which may preclude my making contact with the world-as-experienced by the individuals who use such devices in their everyday lives. While I will attempt to make the journey recognizable and familiar to readers who come from fields of more traditional or positivistic inquiry, I will nevertheless also attempt to stay true to phenomenological method that I have sought to employ. A brief discussion of van Manen’s (2014) phenomenology of practice, which guides this study, follows. I will provide an overview of what characterizes a phenomenological study outlining how this work also borrows methods from the social sciences including the use of interview and observation. I will then explain the processes by which I gathered lived experience 84 descriptions both from research participants, and from other sources. I will share how the illustrative stories or anecdotes were crafted, and the process of reflection that ultimately aims to show what is essential to the phenomenon in its singularity while illustrating what is universal in our experiences as human beings regardless of our particular abilities or dis- abilities. Then, I discuss how the writing is the research – how the crafting of a phenomenological text is in itself the research project; I outline briefly by what means a reader may evaluate the quality of a phenomenological text. Finally, I will end as I began with the focus on the phenomenology of practice as described and practiced by van Manen (2014), as the purpose of this dissertation is not to provide a philosophical treatise but a practical study that may inform the ethical and pedagogical practices of all those who enter in to the lifeworld of young people who speak through a machine. Phenomenology of practice Phenomenology of practice is meant to refer to the practice of phenomenological research and writing that reflects on and in practice, and prepares one for practice. (van Manen, 2014, p.15) This study draws upon a qualitative research methodology, phenomenology of practice, as developed and articulated by Max van Manen (2014). A phenomenology of practice can be understood as a form of inquiry that addresses and serves the practices of professionals through providing important insights into everyday life. This research seeks to provide pedagogical insights that may also inform parents, educators, speech language pathologists and others who gather around the field of augmentative and alternative communication. While the phenomenon at hand, speaking through a speech-generating device, is a decidedly uncommon experience, it is hoped that the understandings gleaned may speak to the common human experience of connection through language and speech. 85 Elements of phenomenological inquiry The practice of human science is never simply a matter of procedure. (van Manen, unpublished manuscript, p. 139) Phenomenology as a method investigates the lived experiences of those who have experienced a certain phenomenon (Litchman, 2006, p. 70). In the simplest terms, phenomenology may be described as the study of lived experience (van Manen & Adams, 2010, p. 450). As a method of inquiry, phenomenology varies from method as understood in the usual scientific sense of the term. The scientific method prescribes a common set of tools, rules, treatments and procedures. Husserl, a founder of phenomenology, argues that while scientific methods are very appropriate for the natural sciences, when the subject matter involves the structures of human meaning a different approach is required (Husserl, 1900/1970). This approach involves taking up of a certain attitude and practicing a certain attentive awareness to the things of the world as we live them rather than as we conceptualize or theorize them (van Manen, 2014). It is therefore argued that phenomenological methodology cannot be reduced to a prescribed set of strategies or techniques. Rather, that phenomenology as a reflective method is the process of the reduction or bracketing - brushing away that what prevents us from making primitive contact with the concreteness of the lived reality (van Manen, 2014). The goal is to produce a phenomenological text that reawakens, evokes or shows the lived quality or significance of a given experience in a fuller or deeper manner. Stated differently, phenomenology gives us insights into meanings of experiences that we may have been previously unaware, but that we can recognize (Richards & Morse, 2007). Adopting a phenomenological attitude. It is all too easy to take language, one’s own language, for granted – one may need to encounter another language, or rather another mode of language, in order to be astonished, to be pushed into wonder, again. (Sacks, 1989, p. xi) 86 While one may suggest that any research study begins with wonder--wondering about a topic or wondering about an answer to a question--in a phenomenological inquiry, adopting an attitude of wonder has a singular importance. The term natural attitude refers to the taken for grantedness with which we experience things, situations, persons and facts of everyday life. For example, as it pertains to this study, as people who can speak, we tend to utterly take for granted this ability. We may engage in a lengthy conversation with a friend with never a moment’s thought to the actual processes of speaking. In fact if we do think about speaking while we are doing so, we may find ourselves unable to carry on such a conversation. We are in the natural attitude of life, not questioning or thinking about speaking: we just are talking. To engage in a phenomenological inquiry one needs to enter into or perhaps seek to embrace a phenomenological attitude. This is means questioning the every day activities and events in which we live. To enter into the phenomenological attitude one must (try to) suspend one’s beliefs and preconceptions about a thing and look at them anew. This attitude is about finding the meaning of the day-to-day things in life instead of just accepting the things around us as they are without any thought as to why they are this way and what makes them so. To return to the example of speaking, taking up the phenomenological attitude would likely cause one to question, what is speaking anyway? Is it merely the projection of sounds through the lungs, larynx and oral cavities or is it something more? How is speaking different from say writing? What is unique about speaking? What is the meaning of speaking in the lifeworld of one who does it? There are hundreds of questions one can ask about speaking once one strips away its taken for grantedness and begins to look at the phenomenon in other ways. As Oliver Sacks states it – to be pushed into wonder (Sacks, 1989, p. xi). Orienting to the phenomenon. 87 Upon adopting this way of thinking, phenomenological research begins with the identification of a question of significant interest and wonder that is of abiding concern to the researcher (van Manen, 1997). Orienting to a particular phenomenon has to be driven by strong and personal interest in it (Saevi, 2005). If one is not deeply and personally interested in the phenomenon, it may be difficult to maintain engagement with it in the ongoing and intense manner that is necessary to complete the project (van Manen, 2014). In the case of the present study, I have been interested in the field of AAC and in particular is the use of SGDs by students for several decades. It was, however, not until I began talking about my experiences and the experiences of the people I knew to a phenomenological researcher that I ever really was pushed to wonder what is it really like to talk with a machine? My orientation to this field had been that of expert, advocate, teacher, researcher and even at times problem solver, but the questions were always of evidence-based practices and seeking ever better processes, never of experiential essence. I never considered really what it would be like to speak through a machine. As I began to explore this topic I at first found myself clinging to my old familiar ways of thinking. I was looking for evidence, using and creating my own and acquired theories to explain what I was reading and seeing in the experiences I had been gathering. It was not until several months after beginning a doctoral seminar in phenomenology that I began to become open to the phenomenon itself. I began to let go of my assumptions about the inherent value of SGDs. I began to peek around my beliefs that experiences of SGDs would and could validate my theories about application and use, and I began perhaps for the first time to hear the voices of participants through an unfiltered ear. To began to question the expectations of those of us who seek to support these young people in making their voices heard. Should not our practices be 88 better informed by understanding of the experience? My orientation slowly changed from one of expert diagnostican seeking solutions, to one of empathic novice seeking understanding. My orientation to my study became pedagogical. I sought to obtain and maintain active attention to the implications of this understanding for parents, educators and health practitioners who support children and youth who use SGDs. The Study of Experience as Lived Through. The past is always too late to capture the present as present. (van Manen, 2014, p. 59) The value of phenomenology is that it prioritizes how people actually experience the world. All its efforts are concentrated upon re-achieving a direct and primitive contact with the world (Merleau-Ponty 1945/2002, p. vii). [Phenomenology] tries to give a direct description of our experience as it is, without taking account of its psychological origin and the casual explanations, which the scientist, the historian or the sociologist may be able to provide. (Merleau-Ponty 1945/2002, p. vii) This direct description is undertaken by trying to capture the living moment or the now, but of course it as soon as one tries and capture the now it has already past. It is always too late for us to be in the moment. The paradox here is that despite the effort to see the world as it is immediately experienced, it can actually only be grasped retrospectively by reflecting on the already passed (past) experience. So the data of a phenomenological study is lived experience descriptions that try to recall and recreate the concrete lived experience. While not ever really achieving a description of what it was like, it can be possible to get close. It is this seeking of the concreteness of life as lived that lets phenomenology show possible meanings of the experience in the lifeworld. Abstaining from assumptions, theory and pre-conceptions (openness). 89 It is a matter of describing, not of explaining or analyzing (Merleau-Ponty, 1962, p. viii). Bracketing can be described as the act of suspending judgment about the natural world to instead focus on analysis of experience. To put aside what you know or think about a phenomenon so that you may come into closer contact with it as it is. Bracketing does not mean that one ignores the theoretical or scientific information about the phenomenon being studied, but rather that one attempts to make them explicit in order that they might be examined for ways that they either can be used to extract phenomenological sensibilities or conversely ways that they obscure our understandings of the concrete. Aiming to grasp the essence of the phenomenon. Essence is that what makes a thing what it is (and without which it would not be what it is) (van Manen, 1997). The eidetic method can assist in uncovering the invariant meaning (eidos) of a phenomenon. This method involves looking at other related phenomenon to see how they might be the same yet different. The comparison can help to pull away the meaning structures that are common to related phenomenon leaving us closer to discovering what is unique about the experience. This Husserlian tradition of phenomenology recognizes that we can never see a thing from all sides or perspectives at once, so the full essence of a thing can only be appropriated in transcendental or pure consciousness – in some sense abstracted from the perception of the experiential world. Alternatively, the meaning of a phenomenon may be understood by its mode of being. Things can be understood in terms of their thinging– their being in the world. Heidegger argued that Things are not, as Husserl proposed, first of all phenomena that are constituted in consciousness. Rather, the essence of things comes from the ways we encounter them immediately in the world where we use them. This study will take a largely Heideggerian 90 approach to understanding how the phenomenon of speaking with or through a device shapes the user’s being in the world. The basic Husserlian methods of seeking the invariant meaning of a phenomenon will be used when exploring how speaking through an SGD is a unique experience of speaking that has elements of what it is to speak while presenting as different and clearly a unique way of conveying one’s thoughts through audible means. The Reduction (dynamic play of showing and hiding). The method of the reduction is to bring the hidden, invisible, originary aspects of meaning that belong to the pre-reflective phenomena of lifeworld into visibility or nearness (van Manen, 2014, p. 221). However, as Levinas (1969) suggests what presents itself in consciousness is always haunted by the alterity of what withdraws itself as absence and so always presupposes an othering. So the task is to engage in a descriptive dance, showing the whatness of a phenomenon while constantly being aware that it is also being hidden from our view in that we can never actually get to the experience in its pre-reflective originary state. The reduction, or perhaps better said the series of methods undertaken to achieve the reduction, is to systematically and intentionally enter into this activity of uncovering so as to come as close as we can to something that will always ultimately allude us. Employing a series of methodological devices helps to accomplish the reduction. In fact it can be said that all the elements of the method discussed thus far are various types of reduction: creating a sense of wonder (the hueristic reduction), bracketing one’s preconceived notions or feelings about the phenomenon (the phenomenological reduction/ epoche), stripping away theories which overlay the phenomenon are all types of reduction (the heurmenutic reduction), seeking the invariant essence or meaing comparing the phenomenon with other related but different phenomena (eidetic reduction), and explicating the modes or ways of being 91 that belong to the phenomon (ontological reduction). The main work of a phenomenological study, the research itself, is done in the methodological and vocative reductions which are sought through the process of writing and rewriting texts. Writing as research. One aimed for the light of insight, but one ends up facing the darkness of the night (van Manen, 2006, p. 721). The phenomenological process of emulating the pre-reflective experience is preformed through writing. The intent of writing a phenomenological text is to produce textual portrayals that resonate and make intelligible the kinds of meanings that we seem to recognize in life as we live it (van Manen, 2014, p. 221). The challenge of writing is that one only has words in which to bring into presence this phenomenon, and no words will never truly be able to accomplish this. Despite this, one must seek to find the words and phrases, styles and traditions, metaphor and figures of speech that may work together to bring the phenomenon to life and to let the reader be addressed by the writing such that they may recognize both what is unique about the phenomenon as well as what may call to us as universal in our understanding of the human experience. The path of this inquiry Gathering the data. Phenomenological research data can be generated from a variety of sources. This may include: • the investigators own experiences, • collecting the experiences of others through interview, • seeking experiences of others through close observation of their life as they live it, 92 • borrowing experiential material from literary works, tracing the etymological meanings of words that gather around the phenomenon in question, • gathering myth and metaphor, and • looking to phenomenological texts for insights they may bring to uncovering the meaning structures of the phenomenon. Phenomenology has been described as the reflective study of the pre-reflective or lived experience (Adams, 2008). This means we are seeking to study the moments of the now as we are living through them. Yet those moments are only accessible to us to be studied as reflections on the now as the true now is elusive, gone the moment we try to describe it to someone. The moment we try to put into words any experience we are defacto already reflecting upon it. The words themselves are necessarily an abstraction of what the actual lived through experience was. In trying to get as close to the actual experience as is possible, phenomenology seeks concrete descriptions of experience to reflect upon. This is different from other qualitative methods such as for example Narrative Inquiry as people’s perceptions about their experiences is not what we seek but clear concrete lived through descriptions of the thing, the moment, the phenomenon. In phenomenology we are interested in possible experiences. That is to say we are not so concerned with the factuality or actuality of an experience, but with the recognizability of the experience of the phenomenon by the reader. This recognition is what Butendijk (1970) refers to as the “phenomenological nod” (p. 596). This search for possible experience allow for phenomenological data to be gathered from a variety of sources including published accounts (books, blogs) and even literary renditions (novels, movies). What is important is that the data be a concrete description of an experiences as opposed to a perception or remembrance about an experience. 93 My lifetime experience of Augmentative and Alternative Communication (AAC). As I have worked in and around the field of AAC for over thirty years. During this time, I have been with many SGD users. Observational experiences not first person experience of the phenomenon, however as I reflect back to those moments I found myself recalling many experiences that I have found useful in constructing anecdotes. Upon the advice of a colleague I also undertook to spend a day speaking only through a device. While this particular experience is not one that I ultimately chose to share for this study, I learned so much from it. Mostly perhaps that speaking only through a device had the effect of rendering me silent. From published accounts. This study began with a search for experiences of speaking with or through SGDs in the published literature. There have been several books written by people who use speech-generating devices to communicate with others. These include the wonderful Reflections of a Unicorn by SGD using speech pathologist Rick Creech (Creech, 1989) that I first read many years ago but came to experience in a new light, I Raise My Eyes to Say Yes the story of Ruth SienkiewiczMercer (Sienkiewicz- Mercer & Kaplan, 1996) and in what may be the story that first awakened my questioning of what I thought I knew or understood, The Diving Bell and the Butterfly: A Memoir of Life in Death (Bauby, 1998). I also was thrilled to find the eloquent and insightful memoir of Dr. Albert Robillard, an anthropologist who wrote about living with motor neuron disease that left him unable to speak with his natural voice (Robillard, 1999). And most recently I have been drawn to Ghost Boy by Martin Pistorius as a source of amazing first hand accounts of what it is like to become voiceless and then to be (re)given the gift of speech through the acquisition of an SGD (Pistorious, 2011). 94 Lived experience descriptions were also borrowed from empirical studies in the area of Augmentative and Alternative Communication (AAC). These descriptions were found embedded in the findings of a qualitative study where the participant gave a glimpse into a concrete lived moment (for example Doreen’s accounts in Smith-Lewis and Ford, 1987) or in papers written about speech-generating devices and the people who use them (for example, Emma Brocke’s 2005 interview with Stephen Hawking, and first person accounts of SGD use in Jeffery Higginbotham’s (2010) chapter on the role of speech synthesis in Augmentative and Alternative Communication). Stories of SGD use were taken from blog posts and online videos. Colin Portnuff’s beautiful talk about speech and voice technology in AAC was one of the most important accounts I uncovered as I began this journey. From the same site I was re-acquainted with a talk given by Michael Williams, an AAC user who writes and speaks widely about AAC. In addition, while listening to CBC radio one day, I was given the gift of Lee Ridley. Ridley is a comic with cerebral palsy who goes by the name The Lost Voice Guy. His wonderful comedy sketches speak volumes about the reality the world of speaking through a device. Lee’s sketches are posted on YouTube, and he has an insight and very funny sketch about speech-generated voices on the website on AAC Scotland’s website (http://www.aacscotland.org.uk/AACVideos/). Finally, some stories of SGD use in this study came from fictionalized accounts of young people who use these methods of communication. In particular the novel Out of my mind by Sharon Draper (2010) provided evocative and telling descriptions of what it might be like to be a young woman who breaks through her silence to speak through a machine. From young people who use SGDs. 95 Participants in this study included nine people who currently use SGD in their daily lives and who have had the experience of using said device in the context of their school experience. The participants ranged in age from 18 years to 40 years. Eight of the nine participants have cerebral palsy and have had severe speech and communication impairments throughout their lives. The ninth participant came to use a SGD in middle school as she lost the ability to communicate effectively through speech as a result of an acquired degenerative condition. All participants used some type of SGD, although one young man suggested he had never been able to find one that really met his need for communicating, so he chose to speak to others primarily through the low tech system of pointing to a letter/word board that he constructed for his personal use. His story in particular will show itself as I write about the demands of the SGD. All other participants used sophisticated dedicated SGD and were competent in the use of their device and the language system their device employed. All participants were able to read and write to some degree, although only the three eldest participants could be described as truly literate. Participants used their device to engage in the interview process and/or to further engage in dialogue through electronic medium (Facebook, email, and/or text messaging). Gathering experiential material. Interview. The primary method of gathering lived experience descriptions from participants was through unstructured interview. These interviews were conducted both face-toface and online, although in every instance the first and primary interview took place in a faceto-face method. In most cases the interviews were face-to-face. The participant would respond to my questions using their device in combination with non-verbal communication modes such as head nods, grimaces, and shoulder shrugs. 96 Wherever possible interviews were recorded, and many were video recorded so that I could review not only the words but the non-verbal communication associated with the messages from the SGDs. Each participant participated in at least two face-to-face interviews with some participants participating in several more over the course of the study. Interviews tended to start out with questions such as can you tell me about a time you remember talking with your device?, or can you remember a particular time you used your device to speak to someone? These questions seemed difficult for participants to answer at first. They tended to answer with what they thought of their devices. For example, “It helps me to say what it in my head”, “It’s great!”, “sometimes it doesn’t work so good”. Pulling out concrete moments of device use was challenging perhaps as one participant said, “no one has ever asked me to talk about my life like this before”. This statement is revealing about what it may be like to speak through a SGD. The simplest of conversations may never happen for one who speaks through a device. Yet van Manen (2014) suggests that this is a common challenge, not only for those who speak through a machine. People tend to be able to share easily their impressions of a thing, their beliefs about a phenomenon, or their opinions about an experience. However, to describe the experience as one experienced it can be quite challenging, even when one can speak. To help participants understand that I was seeking concrete remembrances of their actual lives, I asked that they tell me about a particular time/event, so that I could see it like a movie. Alternatively, I asked them to tell me about it in the manner of a story told to someone who wanted to know how to talk with the device. These types of instructions helped to extract the concrete moments of device use, but typically those only emerged after the second or third faceto-face interview. 97 Interviews took a great deal of time, many times several hours. This is the nature of communicating through a device. It is slow. The interviews themselves became material for LEDs, as will be seen in the subsequent chapters of this text. The very process of participating by talking through/with a SGD gave rise to many concrete moments that illustrated what it was like. For me each interview was a constant reawakening of wonder. I had never, despite my decades of working in the field, spent such dedicated time actually conversing with a SGD user. Consequently, I had never really understood what using a device to communicate is like. Online interactions. As face-to-face interviews were so time intensive, asynchronous modes were also heavily drawn upon for this study. Many of the LEDs were obtained through online modes, with email and Facebook messenger conversations being the most common. In one instance a participant was interviewed via Skype which one could consider face-to-face but that lacked the access to the fullness of the experience that subsequently speaking in person offered. Colin Portnuff’s (2006) thoughts on online interactions explain this phenomenon well, There was a period when e-mail acted as the great leveler. People who could not speak could correspond via e-mail asynchronously. It didn’t matter how much of a struggle it was to enter text, because we did it on our own time. Then along came chat capabilities, and we were back to disabled. And then the nuclear bomb hit. Voice chat. Just when we thought it was safe to turn to our PC for a level communication field. (http://aacrerc.psu.edu/index.php/webcasts/show/id/3) A listening gaze (close observation). In their book Nursing and the experience of illness: Phenomnology in practice, Irena Madjar and Jo Ann Walton (1999) coin the term “the listening gaze” to explain how it is in nursing when one has adopted a phenomenological stance. Such a gaze, they suggest, allows nurses to hear the sound of a patient coughing and recognize not only the nature of the cough but also the tiredness of the exhausted patient (Madjar & Walton, p.12). 98 It is with such a gaze that I set upon to involve myself with close observation of participants going about their daily lives also provided phenomenological data for this project. I spent the days with participants as they went about their day at school, as they interacted with their friends at the bowling alley, as they attended appointments with AAC professionals, as they interacted with their families and as they joined me in attending local events. Observation was most often done in the context of school settings to keep in tune with the pedagogical orientation of the study. I spent several entire days at school with the participants who were attending school at the time of my study. Encounters with SGD users outside of the school context were also documented. Some of these were planned parts of the study, others by happenstance as my work and my world offered up opportunities to be with adults and young people who used SGDs in various contexts. In each of these encounters with my participants and their world, I strove to maintain a listening gaze. By listening not only with my ears to what my participants were saying to me and others, but also with my eyes I was able to see past the often few words that they spoke to more complete meaning of what speaking with a device might be. Adopting an attentive listening gaze helped me to see the toil of their bodies speaking with a device might entail, the response or nonresponse of others, and the moments of connection and disconnection that their words alone could have never expressed. Constructing Anecdotes. One rhetorical device used in phenomenological writing to evocatively reveal the themes to the reader is the anecdote. Anecdotes are carefully crafted from the lived experience data to allow the phenomenon to be made comprehensible, to bring it to life - to evoke the phenomenological nod. A well crafted anecdote will evoke in the reader a sense of I have 99 experienced that or a sense of clarity and understanding of the phenomenon in its concreteness, pre-reflectively, as lived. In the case of this study anecdotes were crafted from the lived experience descriptions obtained through the various data collection methods. The anecodotes were crafted so that they might evoke a sense of recognition in persons who use SGDs as well as, in some instances, a sense of recognition in all of us who seek to be understood by others through our words. The notion of anecdote may seem problematic to some as crafted anecdotal evidence is often not seen as acceptable to empirical generalizations. It is important to keep in mind that generalization is never the aim of a phenomenological inquiry, rather the aim is to evoke a sense of recongition of a universal truth that is revealed by a well told story of a concrete lived experience (anecdote). A good anecdote will show the particular while really addressing the general or the universal. Checking in: Is this what it’s like? While member checking is not an expected process in phenomenological studies, I did in most instances ask participants to let me know if I got it right when I crafted an anecdote from their lives (told of or lived through). This was important to me as often the lived experience descriptions were not as detailed as I would have hoped to be able to obtain. As will be shown in the subsequent papers, speaking with an SGD is not easy. Many times participants gave me severely truncated versions of their experiences and it was my job to fill in the details that would have taken them so much time and effort to add in themselves. It was, therefore, very important to me that my anecdotal material remained true to the stories they were telling me. I also had occasion to share my constructed stories with several participants whether they were the originators of the story or not. In these instances I asked if they recognized that 100 experience, or if it seemed right. One instance of checking in stands out for me in this process. I was visiting one of my participants at her home. She knew that I had recently done a presentation of my study at a conference and asked me if I would share the presentation with her. She and her mother watched with apt attention as I shared the anecdotes and reflections that I had worked through for the conference. Upon finishing we sat a moment or two in silence then she turned to me with a big smile and constructed her response. “THAT’S JUST WHAT IT IS LIKE FOR ME!” That provided me with a strong sense of validation. Reflection and Reduction. Thematic analysis. The reflection involves methods of seeing or perhaps uncovering meanings in the texts (anecdotes). This begins with a search for themes although these themes should not be confused with the themes that emerge from other types of qualitative inquiry. Themes are not derived from the number of times that they emerge from the data. Grasping and formulating a thematic understanding in a phenomenological study is not a rule bound process but an act of free seeing that is driven by the epoche and the reduction (van Manen, 2014). Thematic analysis is the process by which structures of meanings that are embodied and dramatized in the experience (speaking through a device) are recovered from the textual descriptions of the phenomenon. Thematic analysis derives first from a holistic reading of the text to capture in a phrase the main significance (eidetic, originary or phenomenological meaning) of the text. This is then captured by a phrase which may introduce the overall theme. Then, a more selective reading is done searching for statements or phrases that seem particularly revealing. These statements are highlighted or captured as they are particularly useful in reflection and the crafting of the text. Finally, every sentence is looked at to explore what each 101 may reveal about the experience being described (van Manen, 2014). This line by line analysis involves asking what does this sentence say about the experience of speaking through a device. Answers to the questions posed provided further fodder for analysis and reflection. Using Lifeworld Themes: The Existentials. The notions of lived relation, lived body, lived space, lived time, and lived things and technology are existentials in the sense that they are belong to everyone’s life world – they are the “universal themes of life” (van Manen, 2014, p. 302). These existential themes were used as guides for reflection in the research/writing process. The exploration of lived things and technology (materiality or as Don Ihde suggests postphenomenology) are explored through all reflection and analysis but are predominant in the paper “The Speech-generating Device Thing.” The themes of lived body, lived space, and lived relations all play heavily in exploring the meaning of voice in the lives of people who use SGDs. Lived time has particular meaning in the lifeworld of those who speak with a device and therefore a complete paper is devoted to exploring this existential theme and its impact on lived relation. Conceptual Analysis. A useful method of reflection on the phenomenon is to explore the meaning of the words that adhere to it or gather around it. Insights may be gained from seeking the original meaning of words used to describe the experience or phenomenon. For example, in this study many of the resulting texts explore the meaning of words such as speaking, talking, generating. Is speaking the same as talking? Are they both part of the experience of using a device? Are they somehow understood differently for someone who speaks in alternative modes? In some instance words that come from the anecdotes will be explored to gain insights to what it is like to speak with a device. The word dumb for example is explored in chapter 7 for its 102 original meaning in Old English “silent, unable to speak” and its related notions of “defective perception or wits” (Dumb, n.d.). What can these meanings of this word tell us of what it is like to speak through a machine? And what of being slow? What does the word slow mean, and how does the meaning shape the lived experience when one speaks, albeit very slowly, through a SGD? Phenomenological Texts as Insight Cultivators. Reading phenomenological (and other) texts was done to cultivate insights into the phenomenon itself as well as insights as to how the methodological reduction could be accomplished. Each paper presented in the subsequent sections draws upon various phenomenological scholars as well as scholars in the field of AAC. Heidegger is called upon throughout the resulting texts both as guide to existential phenomenology (1962) and to gain insights from his exploration of language, his exploration of things (1971) and his discussion of technology (1977). The writings of Merleau-Ponty have been drawn upon heavily in this work as he touches on speech, language and language learning (Merleau-Ponty, 1964) and particularly speech as an embodied phenomenon (2009). The work of Don Ihde was particularly useful in exploring the relationship between the human and the technology that come together in the unique configuration that allows a speech impaired person to become one who speaks (Ihde, 1979). van den Berg (1970) is referred to in the paper which explores the existential experience of lived time, and Levinas (1985) and Verbeek (2005; 2011) help to provide understanding of the ethical and moral demand that seemingly come into being around the use of SGDs. Drawing upon the AAC literature. Insights from the works of other scholars in the field of AAC and linguistics have been infused into the resultant texts. In particular Janice Light’s seminal work on communicative competence (1998), provides the current theoretical framework 103 in the field of AAC and therefore is referred to often throughout this dissertation. Jeff Higginbotham and his colleagues have written much on the issue of time and timing in AAC (1999; 2002), as well as issues of computer generated voice and benefits and challenges therein (2010). Numerous additional scholars from the field of AAC are cited in each of the subsequent papers. Crafting a Phenomenological Text: Writing and Re-writing. We find in texts only what we put into them (Merleau-Ponty, 1962, p. viii). Writing is the process through which the analysis happens, and writing is, of course, the product of the process. Writing a phenomenological text involves putting words on paper but it also involves turning words and concepts around in one’s head. I have been writing and rewriting these texts for several years. I have written many drafts on my computer but have also been compelled when I have been particularly challenged to grasp at meaning to take my pen in hand and write my words down on yellow legal pads (my favourite paper on which to work things out). I have also been writing as I have hiked up mount Tzouhalem on Vancouver Island and as I walked my little dog around our neighborhood. I have found myself writing as I sit beside two young children on a plane and am reduced once again to wonder as I listen to them emerge as speaking beings. “Susie look we are going up!” says the child that may not be yet quite three years old. A sentence that is quite ordinary given the circumstance, and yet it is amazing the clarity and ease with which this young child can express herself. I am struck again by how different the phenomenon of speaking is when one can speak naturally than when one must speak through a machine. I began writing about the rarity of a child of three with severe speech impairment having access to a SGD through which she could express such thoughts to her sister. And the realization that any three-year-old would be moved to share their excitement 104 about going up in the air in a plane through words. The difference and the similarity of talking whether naturally or through a device is put in front of me at every turn, as I am pre-occupied with the phenomenon at hand. While the research begins in gathering the stories, the true research, the analysis, happens during the writing process. As van Manen (2014) suggests a phenomenological study cannot just be written up. There are no results to write up; the writing is the process of analysis – of creating the resulting texts. Through the writing process one takes a lived experience description and shapes it (re-writes it) into an evocative anecdote to use to bring the experience into recognizable nearness. Then the reflection begins in earnest through writing. Writing about what the anecdote shows, perhaps bringing in some research from the area as a process of bracketing or making theories and presuppositions clear, looking for insights in meanings of the words that gather around the phenomenon, exploring similar yet different phenomenon to point to what is the unique meaning of the one being explored. All this is done through the writing process, and all this is indeed the research. The process is iterative. I prepared many papers or versions of papers, written and rewritten in the hopes of presenting something close to a good phenomenological text. With each iteration, each beginning and each passing I have learned something about the phenomenon. I have often found myself astonished by the real experiences of speaking through a device, a phenomenon of which initially I thought I had so much knowledge. Yet, I remain fully aware that despite this constant preoccupation with and attention to the writing it will never be complete. There will always be more to learn about this phenomenon. While this condition may be daunting, and sometimes vexing, it is also rather liberating. I know now that I will continue to return to this question, these stories, these words and phrases throughout my career. It has been 105 said that it is not what you can do with a phenomenological study but what a phenomenological study can do to you. Certainly that rings true as I have been forever changed through this enlightening process. I have also been called to use this research to illustrate to others who enter into the world of those who speak through a machine that our interactions must not only be shaped by our gnostic (cognitive) knowledge but pathic (non-cognitive) knowledge that causes us to be understandingly and empathically engaged in their lives. Appraising a phenomenological text. … one must evaluate it by meeting with it, going through it, encountering it, suffering it, consuming it, and, as well, being consumed by it. (van Manen, 2014, p. 355) As a phenomenological text may be different from that which many in the field of special education and rehabilitation medicine are familiar it may be useful to provide some criteria for appraising a phenomenological text. van Manen (2014) proposes a series of questions a reader might ask when appraising a phenomenological text either as the writer or as the reader. These questions are as follows: Does the text induce a sense of contemplative wonder and questioning attentiveness to the phenomenon at hand? Do you find yourself wondering what this phenomenon is and then what is it really like? Does the text contain rich, concrete, descriptive experiential (narrative) lifeworld material? Are you taken into the experience in a concrete manner, such that perhaps you can see it unfolding or imagine what it really might be like to speak through a machine? Does the text show reflective allusions and offer you surprising insights that go beyond the taken-for-granted understandings of everyday life? Do you find yourself seeing beyond what is you might think you know or expect? Does the language of the text take your deeper into your understanding of the phenomenon? 106 Does the text contain strongly embedded meaning? Does it speak to us and address our sense of embodied being? Phenomenology does not just aim for the clarification of meaning, it aims for meaning to become experienced as meaningful (van Manen, 2014, p. 373). Is the text itself experienced as meaningful to the reader? Does the text awaken prereflective experience through vocative and presentative language? Does the language chosen guide one towards the experience? Are the words chosen with care to illustrate and illuminate the experience? Perhaps most importantly for text that aims at the phenomenology of practice, does the study offer us the possibility of an intuitive or inspirited grasp of the ethos of life commitments and practices? Does the text awaken ethical and pedagogical questions and/or callings in the reader? In addition, one may ask if the text remains disciplined and constantly guided by a self-critical question of distinct meaning (eidos)? Does the text stay focused on the question, the phenomenon at hand, or does the author digress to questions or phenomenon that are unrelated to that which is being studied? (van Manen, 2014, pp. 355-356). I offer these up as questions that one might consider as one reads the papers in this study. It is my hope that they might come close to the achieving the rich, evocative pieces that leads one to wonder about, understand and care about the lifeworld of those who speak through a machine. A practical phenomenological inquiry. You’ve given me a burden I never knew I had. (Teacher, personal communication, 2011). This simple, yet somewhat disquieting, statement was made by a teacher who heard me present some of my initial research into what it is like to speak with a SGD. She had worked for 107 several years with a young man with CCN who was learning to use a SGD. She said felt compelled to talk to with me after I had presented. She had tears in her eyes, and was clearly moved by my presentation. At first I was rather shocked. My heavens, the last thing I want is to give teachers a burden! Teachers who have students with CCN in their classes have burdens enough to ensure their students gain language and literacy as well as have access to meaningful social interactions. I was certainly not seeking to add to their challenges with my work. As we spoke further I realized that perhaps it was not that I who was seeking to add to their burdens, but only attempting to make sure they understood what the challenges are for the students as well as what their challenges are as educators. It is seldom the case that educators hear the voices of their students in research, certainly it is very rare for them to hear the voices and experiences of children and youth with CCN. As we talked, I came to understand that this educator had probably just given me the best compliment I could have received. Even though she was something of an expert in teaching students with special needs, she had never before really been faced with the meaning of every child having a voice, a true voice, an audible voice, a voice that was heard. We talked for some time and I promised to keep in touch, which we have done. In retrospect, she has risen to the task, the burdensome understanding, she acquired that day so many years ago now with amazing vigor and remarkable success. The young man is being actively and carefully supported in the use of his device to speak, but more than that, the understanding of the meaning of speaking with his device is being considered in ways that never were before. The teacher tells me she was forever changed that day when she heard me speak, and it seems so was her practice. This, then, is the ultimate goal of a research project that aims at the phenomenology of practice, to address and serve the practices of those in professions that gather around a 108 phenomenon. In this instance it is hoped that the resulting texts might provide insights to parents, teachers, speech pathologists, and educational assistants who help children learn to find and share their voice both at home and at school. Phenomenological inquiries are decidedly rare in special education (McPhail, 1995). It is hoped this foray into the method may both inform and inspire others in the field to both take up and learn from phenomenological inquires. It is also hoped that these texts may speak to those in the field of rehabilitation engineering as they seek ever more human centered technological designs for SGDs. It is my desired wish that through the thoughtful reflection of the various meanings of speaking through a device that we can be called to reflect carefully on our practices and that we might invite others to do the same. 109 References: Adams, C. A. (2010). Teachers building dwelling thinking with slideware. The Indo-Pacific Journal of Phenomenology, 10(1). Bauby, J.-D. (1997). The diving bell and the butterfly. New York: Alfred A. Knopf. Butendijk, F.J.J. (1970). Some aspects of touch. Journal of Phenomenological Psychology. 1(1), 99-124. Creech, Rick (1992). Reflections from a Unicorn. Greenville, NC:RC Publishing. Draper, S. M. (2010). Out of my mind. New York, NY: Athenum Books for Young Reader. Dumb. (n.d.). In Online Etymology Dictionary. Retrieved from www.etymonline.com/index.php?allowed_in_frame=0&search=dumb Edyburn, D. L. (2014). Advances in Special Education Technology. Fried-Oken, M. & Bersani, H. A. (2000). Speaking up and spelling it out: Personal essays of augmentative and alterative communication. Baltimore, MD: Brookes. Heidegger, M. (1962). Being in Time. New York: Harper & Row Heidegger, M. (1971). Poetry, language, thought (A. Hofstadter, trans.). New York: Harper Collins Publishers Inc. Heidegger, M. (1977). The question concerning technology. In David M. Kaplan (Ed.) Readings in the philosophy of technology. Lanham, MD: Rowman & Littlefield. Higginbotham, D. J. (2010). Humanizing Vox Artificialis: The role of speech synthesis in augmentative and alternative communication. In Mullennix, J. & Stern, S. (Eds) Computer Synthesized Speech Technologies: Tools for aiding impairment. Hershey, PA: IGI Global. 110 Higginbotham, D.J. and Caves, K. (2002). AAC Performance and usability issues: The effect of AAC on the communicative process. Assistive Technology: The official journal of RESNA, 14(1), 45-57. Higginbotham, D. J. and Wilkins, D. P. (1999). Slipping through the timestream: Social issues of time and timing in augmented interaction. In D. Kovarsky, J. Dunchan and M. Maxwell (eds.) Constructing (In)competence: Disabling Evaluations in Clinical and Social Interactions, 49-82. Mahwah, NJ: Lawrence Erlbaum Associates. Howery, K.L. (2012). Phenomenological Investigation Into Speaking With A Machine. Proceedings of ‘McLuhan's Philosophy of Media' Centennial Conference 2011, pp. 249256. Brussels, Belgium: Vrije Universiteit Brussel. Husserl, E. (1900/1970). Logical Investigations. London: Routledge. Ihde, D. (1979). Technics and Praxis. Boston: D. Riedel. Lévinas, E. (1985). Ethics and Infinity. Duquesne University Press. Light, J. (1989). Toward a definition of communicative competence for individuals using augmentative and alternative communication systems. Augmentative and Alternative Communication, 5, 137–144. Litchman, M. (2006). Qualitative research in education: A user’s guide. Thousand Oaks, CA: Sage. Madjar, I. and Walton, J.A. (1999). Nursing and the experience of illness: Phenomenology in practice. New York, NY: Routledge. McPhail, J. C. (1995). Phenomenology As philosophy and method: Applications to ways of doing special education, Remedial and Special Education, 16(3), 159-165. 111 Merleau-Ponty , M. (1958/2002). Phenomenology of Perception. London: Routledge Classics. Merleau- Ponty, M. (1964). Signs. Northwestern University Press. Pistorius, M. and Lloyd Davis, M. (2013). Ghost Boy. Nashville, TN: Nelson Books. Portnuff, C. (2006, October, 18). AAC - A User's Perspective. Retrieved from http://aacrerc.psu.edu/index.php/webcasts/show/id/3 Richards, L. and Morse, J. M. (2007). User’s guide to qualitative methods. Thousand Oaks, CA: Sage. Robillard, Albert J. (1999). Meaning of a disability: The lived experience of paralysis. Philadelphia, PA: Temple University Press. Sacks, O. (1989). Seeing Voices: A journey into the world of the Deaf. Los Angeles: Vintage. Saevi, T. (2005). Seeing Disability PedagogicallyThe Lived Experience of Disability in the Pedagogical Encounter (Unpublished doctoral dissertation). University of Alberta, Edmonton, AB. Selinger, E. (2006). Postphenomenology: A critical companion to Ihde. Albany, NY: State University of New York Press. Sienkiewicz-Mercer, R. & Kaplan, S. B. (1989). I raise my eyes to say yes: A memoir. West Hartford, CT: Whole Health Books. Van den Berg, J. H. (1970). Things – Four Metabletic Reflections. Pittsburgh: Duquesne University Press. Van Manen, M. (2014). Phenomenology of practice: Meaning-giving methods in phenomenological research and writing. Walnut Creek, CA: Left Coast Press. Van Manen, M. (2007) Phenomenology of Practice. Phenomenology & Practice. 1(1), 11-30. 112 van Manen, M. (2002). Writing in the dark: Phenomenological studies in interpretive inquiry. London: ON: The Althouse Press. Van Manen, M. (2001) Professional Practice and “Doing Phenomenology”, In S. Kay Toombs (Ed) Handbook of Phenomenology and Medicine. Dordrecht: Kluwer Press. 457-474. Van Manen, M. (1997). From meaning to method. Qualitative Health Research: An International Interdisciplinary Journal, 7(3), 345-369. Van Manen, M. & Adams, C. A. (2010) Phenomenology. International Encyclopedia of Education, 6, 449-456. Verbeek, P. P. (2005). What things do: Philosophical reflections on technology, agency, and design. Philadelphia: Penn State University Press. Verbeek, P.P. (2011). Moralizing technology: Understanding and designing the morality of things. Chicago and London: University of Chicago Press. 113 Chapter 5: Phenomenological Investigation Into Speaking With A Machine Introduction Perhaps there is no more powerful example of how technology extends the range of the human body than assistive and adaptive technologies used by persons with disabilities. One such technology is the Voice Output Communication Aide or VOCA. VOCAs permit the storage and retrieval of electronic messages, allowing the user to communicate using human sounding speech output. These technologies provide the opportunity for extending the abilities of people who cannot effectively communicate through their own natural speech. This includes both those who have been speech impaired their whole lives, and those who have lost their ability to speak naturally due to an acquired disability. Phenomenological research involves careful and systematic reflection on the lived experience. This paper presents a phenomenological investigation into the experience of using a VOCA to speak. McLuhan’s notion of extension and amputation are used as heuristics for exploring themes that emerge from the lived experience descriptions of people whose abilities are extended through the use of these technologies. While it is clear that many technologies make the impossible possible, the VOCA goes perhaps farther, making the ordinary- the taken for granted - possible. Understanding the meaning of these technologies in the lifeworld of people who cannot speak has important implications for the field of augmentative and alternative communication as well as for philosophical studies into human technology relations. Most of us take the ability to speak utterly for granted. To speak is to have a voice. To be understood by other through the use of our voice. From the time we are very young children our primary means of communication is through speech. We talk with our friends. We whisper 114 secrets. We shout and cheer at the top of our lungs and make our voices heard. We use our voice to share stories across space, and to transmit our stories across generations. But consider what life would be without the ability to speak? Without your voice? Such is the experience of people such as Dr. Stephen Hawking the famous British theoretical physicist. Dr Hawking is no longer able to use his natural voice to speak as a result of a progressive motor neuron disease. Or, the experience of people whom I have worked with most of my career, people with cerebral palsy. People whose bodies do not allow them to coordinate the breath, sound and movement necessary to produce intelligible speech. Imagine if in order to speak your words aloud you must speak with a machine? First I think what to say, then I input the words into my device. Once I have constructed my message, I push “speak” so that I can speak those words out loud. Merleau-Ponty (1958) suggests when we speak we do not think about speaking, rather if we think at all, we think of what we are saying. We must, in fact, stop picturing the code or even the message to ourselves, and makes ourselves sheer operators of the spoken word. While this rings true for those of us who speak with our natural voices, it hardly seems the case for people who speak with a machine. So this then is the question of my study: what is it like to speak with a machine? Transformational Technology Twenty-five years ago VOCAs did not exist. When describing his experiences before acquiring a speech-generating communication device Rick Creech, who has severe cerebral palsy points out: I did have a letter board that I could point to. It worked well with people who would take the time to talk to me; not too many would. To be fair, talking with a person who uses a letter board can be difficult. Most people are unable to put letters together in their minds 115 to form a word. They certainly cannot remember the words long enough to form a sentence. (Creech, 1992, p.47) Communication for people with unintelligible speech was possible, but limited. Talking with text, sometimes written down, sometimes only written in the mind of the hearer. To converse with someone without voice was demanding and burdensome both for the speaker and the hearer. Then in the mid 1980s the first speech-generating computers were made available to persons with severe disabilities. These technologies were revolutionary. People with speech impairments could independently give voice to their thoughts. I accepted as fact that only people who were familiar with me could understand my speech. Then a miracle happened, I was shown and then given a COMPUTER THAT CAN TALK! From that moment on I know that I had left my misfortune behind me. I knew that in this world, I could be a normal individual… If I wanted to talk to somebody I would no more have to wait for my mom or my brother to come and “translate” for me. Now I could be part of this world! (Fried-Oken & Bernsani, 2000, p. 102) This was a technology that provided the possibility of transformative experiences; experiences of being normal, being part of the conversations of the world, and doing so on one’s own. Extending a speech-disabled person’s ability to have an audible voice in the world. Extension that moves a person from silence to voice. Voicing One’s Being In The World But what is this experience? Perhaps foremost it is that of voicing one’s being in the world. I recall the day that Josie came into the centre for the first time. She was coming to see about getting a VOCA. Here was a seven year old little girl who’s eyes shone with expression but who had no speech. As we sat around the table discussing Josie’s needs for a device I grabbed one from the back room and started to program in a few phrases. I then sat with Josie and modeled how the messages could be spoken aloud by touching 116 the buttons. Before long it was obvious to me that Josie understood how the device worked… and then she took over. “mom look at me” Josie spoke aloud by pressing the button on device and looked at her mom to see if she was listening. No response. I whispered “try again Josie” and turned up the volume. She did - “mom look at me!” This time her mom heard. She looked up a little confused. On cue Josie spoke again “mom look at me”. And that is when the magic happened. Her mom looked and Josie said “mom come here” with no prompting and giggled loudly. Her mother, now practically at the point of tears, came over. “mom look at me” said Josie. “I am looking Josie!” This anecdote speaks to the powerful impact of a child acquiring a voice. Her ability to voice her being in the world… look at me here I am! How strange when one considers that really the voice is not hers at all. In fact, in this instance, the words were spoken by my voice , an adult clinician’s voice, as I had recorded the phrases into the buttons that Josie activated to “speak”. Is this giving voice to one’s own self? How very different this experience is for one who speaks with a machine. On the day that I got my new device I finally felt free to say anything that I wanted. I felt that way because I could speak the words by myself. That gave me a sense of pride because I found more words than I ever imagined. I think people truly know me for the first time because I was not hiding a big part of me like I was before. The freedom to express oneself and to let oneself be expressed. To translate what is in our heads and our hearts into expression that show who we are to the others. The freedom to speak our thoughts aloud, to show ourselves. Merleau-Ponty suggests even to know ourselves. For the speaking subject, to express is to become aware of: he does not express for others but also to know himself what he intends (Merleau-Ponty, 1964, p.18). When we speak we reveal ourselves, we even, perhaps, reveal ourselves to ourselves. Is this what Sharlene experienced speaking with the machine? A newfound freedom to reveal herself by finding her words. 117 Extending One’s Space With my new voice, my world began to open up. Finally connecting with people by spoken word. The first time I really saw the power of this was one day when I was with my sister in her back yard. She was gardening. Before, this would have meant that she gardened and talked, and I would watch and listen. In order for me to share my thoughts beyond a few vocalizations and facial expressions she would have to come over so she could read what I was spelling on my letter board. With the speech output device this all changed… that was the beginning of our conversations across the garden. A distance that we had never before been able to traverse. (adapted from Fried-Oken & Bersani, 2000) From being confined to a limited communicative space to conversing across a garden. With access to the word spoken aloud, there has been opening of an audible space in the world for these two sisters. What is created is an existential kind of real estate, a real ground, that cannot be obtained without the power given by the voice of the machine. Finding One’s Own Voice The phrase finding one’s own voice may seem cliché, but it is hardly so for those who speak with a machine. Consider the words of Colin who has lost ability to speak not through surgery but through the debilitating condition of ALS. Much of what I have had to say today is related not to speech, but to voice itself. I would ask you to reflect deeply on how we come to associate voice with identity….I have heard from several physicians and speech pathologists that my voice suits me. This seemed initially to me to be somewhat preposterous. To me it is not my voice at all, but rather a tool that I employ to allow me to speak. But my family, friends, medical team and acquaintances have integrated the voice as a key part of my identity. In fact, my teenage daughter Lindsay is troubled when I change voices, or even when I correct some of the mispronunciations that she is used to and even has come to enjoy. I guess I am beginning to identify with the voice myself. (Portnuff, 2006) 118 A person is recognized by their voice. It is perhaps as unique as a fingerprint and much more apparent to the world. Our voice is our own. Yet this is hardly the case for people using VOCAs. How interesting then is Colin’s struggle. Voices convey so much about us. It appears so does the voice of the machine. This is the first device that I have had that actually has a female voice. It makes a difference as to whether people will take the time to listen. With the other voice people didn’t connect it with me as a person. When I used the male voice it was like thoughts were coming from the machine not from me as person. Since I got the female voice people seem to understand it as my voice... I really feel like this is “my” voice. Sharlene suggests that her personhood was passed over before her female voice. The machine was in the foreground; she was lost in translation. Voice matters. Sharlene has at least come closer to finding her voice as a woman. The importance of this presentation of herself should not be understated. But what of the rest of her, of her size, her life’s journey, her demeanor, her uniqueness? What is left unsaid when the voice is a machine? But The Voice Is A Machine! Talking to people with an assistive device is not easy. This Christmas my family was all here at our place. I had my new device and was I was feeling pressure to keep the conversation moving. I really feel that you can’t ask people to stop talking while I get out what I have to say. So by the time I have my message made they moved on. McLuhan tells us where there is extension, there is amputation. Is this what is happening with the VOCA? In acquiring the technology that gives her the power to produce audible human sounding speech has Sharon been functionally excluded from interactions with others. Has her ability to connect been in fact lost by attempting to speak through the machine? 119 Speaking with a machine is an unnaturally slow process. The rate at which people comfortably hear and vocalize words is about 150-160 words per minute. If a VOCA user could compose their messages at the rate at which an average professional typist can typically type that would be about half that rate at 70 to 80 words per minutes. The reality is that most VOCA users can never hope to achieve speech anywhere close to that rate. Indeed, many can only speak at the rate of 5 or 6 words per minute. For Sharon to write these few sentences about her experiences at Christmas with her family it took her several minutes – not seconds minutes. Talking with a VOCA puts you on the banks of a fast flowing river watching as the stream of conversation flows by. It also seems to make the people moving effortlessly through the flow of the conversation uncomfortable or anxious as they recognize that you are not one of them. The irony of this experience is remarkable. The very thing that the machine provides – the connection through voice – it also denies - the free flowing ease of human vocal interaction. The first time I can recall using an AAC device was in 1993, when I wanted to give kind of a thank-you speech at my BA Grad party. The problem, as I found out while I was TRYING to deliver this speech, was that I had a very hard time keeping track of where I was in the key sequence. Consequently, I kept losing my place, repeating myself and/or skipping ahead and having to backtrack. At one point I became so flustered that I accidentally hit the VERY LOUD SIREN, sending half my audience–including those who were able-bodied–into spasm! It was certainly a MEMORABLE speech! But, a triumph of AAC? Well... No. When using a device to talk there is always a risk that it won’t. There is always a risk that it might, but not exactly how you would intent it to. A machine is after all just that, a machine. When speaking with a VOCA you are reliant upon the machine. What do you do if the computer hard drive crashes in the middle of a conversation? What of asking for help? How do you explain what on earth is going on to people around you? You can’t if your voice is the 120 malfunctioning machine. And to what does the dysfunction hearken back to? Is it the machine that shows itself as defective or is it the person who is dependent upon it? For now, I will leave as I began, listening to the words of one who speaks with a machine. We have much to learn about assistive technology. About its power! About its potential! And, perhaps most of all, about its dreams deferred: about how much work you and I still have left to do to close the gap between its promise and every day reality. (Fried-Oken & Bernsani, 2000, p. 250) As I listen, I hear the call to close the gap between the promise and the practice. I hear the call to keep dreams alive. I hear the call to listen. Is then, when all is said and but surely not done, is the message of people who speak with machines that the real transformational power of technology comes when this extension allows the human beings, not the technology, to be heard? It is my hope that by exploring the realm of technological extensions through the unique and uncommon experiences of persons with disabilities we may be afforded a deeper understanding of technology and of ourselves. 121 References: Creech, Rick (1992). Reflections from a Unicorn. RC Publishing: Greenville, NC Fried-Oken, M. & Bersani, H. A. (2000). Speaking up and spelling it out: Personal essays of augmentative and alterative communication. Brookes: Baltimore, MD McLuhan, M. (1964/1994). Understanding media: The extensions of man. MIT Press: Cambridge, MA. Merleau-Ponty , M. (1958/2009). Phenomenology of Perception. Routledge Classics: London Merleau- Ponty, M (1964). Signs. Northwestern University Press, Chicago, IL. Portnuff, C. (2006, October, 18). AAC - A User's Perspective. Retrieved from http://aacrerc.psu.edu/index.php/webcasts/show/id/3 122 Chapter 6: The Speech-generating Device “This is a communication device called a Macaw,” Shakila tells me softly. “And if you can learn to use switches, then you might be able to use one of these some day.” I stare at the box as Shakila turns it on, and a tiny red light flashes slowly in the corner of each square. The symbols are brightly coloured, and there are words written next to them. I can see a picture of a cup of tea and a drawing of a sun. I watch Shakila to see what will happen next as she hits a switch to select a symbol. “I am tired,” a recorded voice says suddenly. It comes from the box. It’s a woman’s voice. I stare at the Macaw. Could this small black box give me a voice? (Pistorius, 2013, p. 28) In his autobiography Ghost Boy Martin Pistorius shares his first encounter with a speechgenerating device. He is shown a small black box that offers him the possibility of a voice, something that as the result of a devastating illness Martin has not had for many years. A Macaw it is called, hinting at recognition of the thing as something like the brightly coloured species of bird famous for its ability to produce human sounding speech. And it too is brightly coloured, at least on its “face”. The screen of the small black box displays symbols, pictographic symbols that are representations of words and phrases that someone who programmed them into the device thought may be needed or desired to be spoken aloud. A picture of a cup of tea to be selected if one was thirsty, and a picture of the sun to comment on the warmth or the beauty of the day. And then when called upon to do so by the well-timed click of a switch it does exactly what its name implies, it produces human sounding speech. Is it any wonder that a young man silenced by his body for many years might stare in awe at the possibility of this voice box? But the voice is not just given, there are conditions that must be met in order to be able to use this “voice box”. One must learn a way to speak that involves selecting symbols that are presented on the device’s screen, and for Martin that is a challenge. Due to his physical impairments he is not able to reach out and touch the symbol as one of us may do when selecting an app icon on an iPhone. Martin must gain the ability to speak with the device in a decidedly 123 indirect manner, selecting words to be spoken by clicking a switch. For the small black box to give Martin a voice it demands that he must learn to speak anew. Technological artifacts help to shape human actions and perceptions, and create new practices and ways of living – ways of being in the world. Philosophers of technology and media have sought to understand the meaning of many devices or things in the lifeworld of the humans that come into relation with them. Reflecting on a simple jug, for example, Martin Heidegger (1971) inquired into the question of what a thing is, and how in its thinging, it comes to mediate and condition our experience of the world. Phenomenological inquiries into the meaning of screens (Introna & Ilharco, 2006), the neo-natal isolette (van Manen, 2012), ultrasound machines (Verbeek, 2011) and Powerpoint software (Adams, 2008) are examples of scholars questioning beyond what a device is in the mere instrumental or tool- like presentation of itself to the essence of the technology or the meaning of the particular technological device in our lives. There have also been a handful of forays into understanding the thingness of devices that are specially created for people with impairments of their physical body. Maurice MerleauPonty’s (1962) Phenomenology of Perception presents the blind man’s cane to show how an artifact (tool, technology) can extend one’s bodily perception beyond the limits of the finite body. Karl Mulderij (2000) helps us to understand how for a child with motor disability a wheelchair is experienced as an extension of his or her body. Mobility becomes possible not with one’s own two feet and legs but with one’s own four wheels. Don Ihde has explored both eye glasses and hearing aids (2007) as examples of technologies that help us overcome the physical impairments or constraints of our own bodies and allow us to (re)gain specific perceptual abilities. They become an extension of ourselves, our bodies, acting to transform one who is dis- 124 abled (of sight or hearing) into a technology mediated enabled entity. Ihde refers to such humanrelations as embodiment relations. Drawing upon Ihde’s insights regarding human technology relations, and embodiment relations in particular, this paper explores what a speech-generating device is and how a SGD may act to mediate and condition the everyday lives of those with speech impairments who use them. Gathering insights from over thirty years of working with children and youth who use speech-generating devices in their daily lives as well as published accounts of adults who have written about their experiences with these devices, I seek to present a glimpse into how this technology gives itself in the every day reality of people who use them to give audible voice to their thoughts. The SGD as object To exploring the thingness of the speech-generating device, it is helpful to first paint a picture of the device itself. While something of an idea has been given from the encounter with the Macaw above, the question of what a SGD is may remain. In her novel Out of My Mind, Sharon Draper (2012) describes a speech- generating device through the imagination of the main character of her book, an 11 year old girl who has thousands of words swirling around in her head yet due to an unruly body, not a deficient mind, has never been able to speak a single word aloud. First of all, it would have to talk! Oh, yes people would have to tell me to shut up! And I would have room to store all my words, not just some common ones that have gotten pasted onto my dumb plastic board. It would have big keys, so my thumbs could push the right buttons, and it could connect to my wheelchair. It would have to be limegreen. Draper, 2010, p. 125 This imagining of a SGD suggests all its component parts. Computer generated speech to allow it to talk, a memory where words (vocabulary) can be stored, keys or other input options to access or retrieve the words from said memory, and connectivity to one’s self in this case to the wheelchair. The device must be able to be carried relatively effortlessly if one is going to be able to use it to talk throughout one’s day. Sometimes that means attachment to a wheelchair, sometimes that simply means a handle. Finally, the young girl endows it with a unique and bold colour, not the black box that Martin Pistorius encountered but a lime green device to personalize its look as well as its vocabulary. A speech-generating device is as she describes. It is a dedicated computer based system comprised of a display, a means of input such as a keyboard, a memory where the vocabulary is stored, a processor that does the work of transforming the key input into spoken output, and speakers for output. The SGD presents a number of icons, pictographic symbols or text presented in a tabular form very similar to today’s handheld touch devices such as a smartphone or tablet computer. While such touch technologies present a neatly organized grid of icons that, when touched, launch us into the virtual space of an application or app, the screen of the SGD presents pictographic symbols and words that when touched speak the stored word or phrase aloud. A non-speaking child may be invited to touch the icon of a green arrow to say the wants to “GO” or the image of a child waving to say “HELLO” to a passing friend. To expand on these one word utterances a child might choose the icon portraying a happy face with a balloon with the word “fun” which launches a new grid with variety of activities thought by the designer of the system to be fun: go for a walk, listen to music, play catch and the like. Computer software then transforms the text entered by the child into human sounding speech which is 126 spoken through the speakers housed in the device. The speaker (technical object) then it seems becomes the speaker for the child (human). When explaining these devices and their complexity to people they may say, “Oh like Stephen Hawking.” Dr. Hawking, the eminent physicist indeed speaks with a SGD. He has a progressive neurological disease that has taken away his ability to speak with his natural voice. He has made many media appearances, including the popular television show Big Bang Theory. People may even recognize the computer-generated voice he uses as the voice of Stephen Hawking even though in actuality the Neospeech TM voice he has chosen to use is one that any number of other augmented speakers may also be using. Counting on this familiarity, a recent radio advertisement for cell phones seemingly evoked Dr. Hawking using the same computer generated voice has come to be known as his voice. While his name was never mentioned, the voice it seemed was used to help us understand that it was Stephen Hawking who was speaking. One wonders if they had to get his permission to use his voice to create this illusion, or if because it could have been any SGD user that was speaking if the need for personal permission becomes a moot point. Interestingly, the voice of the SGD is, in some ways, a shared voice — anyone with a SGD may use it — unlike the natural human voice that is singular and unique. When listening to Dr. Hawking speak on TV or other media, we may be lead to believe that the SGD enables him to engage in conversation very like those in which we engage in everyday. But his own words tell us that the process is much different. … David Mason, of Cambridge Adaptive Communication, fitted a small portable computer and a speech synthesizer to my wheel chair. This system allows me to communicate much better than I could before. I can manage up to 15 words a minute. I can either speak what I have written or save it to disk. I can then print it out, or call it back and speak it sentence by sentence. Using this system, I have written a book, and dozens of scientific papers. I have also given many scientific and popular talks. They have all been well received. I think that is in a large part due to the quality of the speech synthesizer. (Hawking, 2009, cited from Mullenix & Stern, 2010). 127 A speech-generating device allows one to generate speeches. Like the verbatim notes one may write when preparing to give a lecture or a toast, speeches can be stored in a SGD to be delivered at some later date or delivered in a relatively synchronous time. The generation of the speech comes through the textual input of the user. Compared to the natural rate of speaking, however, it is painstakingly slow. The speaking rate of those of us who can speak naturally is estimated to be between 150 words to 170 words per minute (Yuan, Liberman, & Cieri, 2006). A far cry from the 15 words per minute that Dr. Hawking seems to be so pleased with. And yet, Dr. Hawking’s rate is the norm for one who speaks using a SGD (Newell, 1987). Dr. Hawking’s account tells us that the device allows for speaking in a manner quite unlike speaking with one’s natural voice. While the words are those he has written, in order to give them as a talk he depends of the voice of the device. The device has in the language of Ihde, transformed him into a speaking person once again. And he suggests given the quality of the voice of his device one who has been well received by his listening audiences. It is now to this exploration of the speaking of the speech-generating device that I will turn. Seeking to understand not only what it does— that is, to speak the words of one who cannot do so of one’s own accord—but also to how it may speak in a variety of ways as a thing in the world. The Speech-generating Device as Thing I accepted as fact that only people who were familiar with me could understand my speech. Then a miracle happened, I was shown and then given a COMPUTER THAT CAN TALK! From that moment on I know that I had left my misfortune behind me. I knew that in this world, I could be a normal individual… If I wanted to talk to somebody I would no more have to wait for my mom or my brother to come and “translate” for me. Now I could be part of this world! Fried-Oken & Bernsani, 2000, p. 102 128 For most of my life I never gave a second thought to my ability to speak. It was like breathing. In those days I was living in a fool's paradise. After surgeries for cancer took away my ability to speak, I was forced to enter this virtual world in which a computer did some of my living for me. Roger Ebert, 2011 Don Ihde (2007) tells us that “when we as humans use technologies, both what the technology ‘is’ or may be, and we, as users undergo an embodying process – we invent our technologies, but, in use, they re-invent us as well” (p. 243). He also reminds us that such transformations create both amplification and reduction in the experience one may have ordinarily, in this case the ordinary experience of speaking in the natural mode. The two accounts above exemplify very divergent transformational experiences. On one hand the device seems to hold the promise of re-creation, on the other the reality of bereavement. From one who is speech disabled and dependent to one who is normal and who can speak for oneself - free to be part of the normal speaking world. And yet for Roger Ebert, who lost his power of speech due to cancer surgery, the impact of the device is decidedly reductive, forcing him to feel that he has given up a part of living as he knew it. Forced rather than drawn into a new world - a world where the computer (SGD) has reshaped and re-constituted his life. What is it then that speech-generating devices do as they are taken into relation with a person who relies on them to make their voices heard? It may well be that speech impaired persons encounter the SGD as an embodied amplification of themselves, voicing their being in the world. Yet the reductive pulls of the device may still be heard by those who can not speak with their own voice. When one enters into relation with a speaking machine, may it be that the demands of the devices speak as loudly as the voice allows one to find. Offers One Voice. 129 When I got my talker the first thing I did was to listen to the voices. I saw the one named Jill, I like that name… but it was so old. That’s not my voice it sounds like an old grandma. Okay so I thought maybe I would try Samantha… she sounds like a baby. I am not a baby! Then a saw a voice that didn’t have a name. It was called 13 cool girl. I listened to that voice. That was it. That’s my voice, a cool kid voice. Just like mom always says I am one cool kid. Finding our voice, not something that speaking persons are commonly concerned with, or at least not in the literal sense. We may metaphorically speak of finding our voice when we are seeking a certain way or manner of expression. We do not have to find our actual speaking voice, it is something we are given or perhaps that we grow into. The sound of our voice may result from many factors, our sex, our size, our geographical upbringing. One might say we develop our own voice through its use. Yet as is illustrated in the anecdote the SGD allows for, or perhaps demands, one choose a voice. Indeed it is one of the first things that a user is asked to do as they are setting up their system. In this instance the young woman listens to the voices available to her on her new device to find her voice. A girl’s voice first, the voice must establish her as female as certainly that would be important for an adolescent girl, and it must not sound to old or two young. But one wonders no matter how “cool” 13 cool girl may sound could this really be her voice. Speech-generating devices offer up a myriad of voices to choose from. There are male voices and female voices, there are children’s voices, teenage voices and even Will the Old Man. There are voices that have accents: Micah, the Texan male adult voice, Lisa, the female Australian English and Deepa, the female Indian English voice, and voices which are identified as happy (Peter- Happy) or sad (Peter – Sad). There are even voices that have a pre-assigned personality, take for example Saul the hip hop speech synthesis voice. Saul is a voice that one young woman I know chooses when she wants to sound particularly authoritative, as a natural 130 speaker may do by changing the cadence of their voice. The first time I heard her speak using the Saul voice I laughed out loud in surprise as her voice resonated across the room. The voice captured everyone’s attention and most certainly mine. Each voice offered by the SGD can be listened to as they introduce themselves suggesting “I am.... efficient fast and of very high quality. Why not try me out with your own words”. And while those invitations to select the voice sound gently inviting, one must choose one of them. In setting up the device for use the device, one may say, insists upon the choice of a voice. The device will not speak until a voice is chosen. Might it be that the SGD puts one in the three bears house as Goldilocks in search of comfort, trying on the synthetic voices, not too old, not too young, just right. But one must wonder how it could be just right this voice that introduces itself with a name? Whose voice is it, and can it really come to be one’s own? Yet the voice is not my own. I was watching a YouTube video where another girl who uses a SGD was interviewing Tatum Channing. It was so fun and so weird at the same time. Even though she has a different device than I do she is using the same voice as me. When I closed my eyes it was just like I was interviewing him! While the voices offered up for selection by SGDs are varied they are also finite. It is not uncommon for two people who use SGDs to use the same voice. In fact it seems that many of the young women SGD users I have encountered speak with the same voice. Literally the same voice! They tell me it’s because it is the one that people can understand the best. And certainly this is important. Voices generated by an SGD while of increasingly high quality are still not human and do not carry all the nuanced information that our natural voices do. It was perhaps the biggest event of my life - my first talk to a group of students and educators. I had prepared my speech carefully and delivered it in what I hoped with be an engaging manner. When I done there was polite applause and the principal thanked 131 me for my speech. No mention of what he learned from the speech, which is how I had generally heard thank-yous done. It wasn’t until I was in the hallway and the kids were going back to their classrooms that I really understood what the problem was. Two young men were walking, “Did you understand anything that guy said?” “Nope, he sounded like a robot to me, I barely understood a word.” That was the last time I delivered a speech with a computer generated voice. My message was getting lost in text-to-speech translation. To have a voice that you can use but that no one understands may be like having no voice at all. Given the primacy of being understood, one might understand the selection of an understandable voice over a cool or unique voice, and why that voice is the one that everyone chooses. For those of us who speak with our natural voice, our voice is as unique as our fingerprint and as personal. It seems that the SGD strips the uniqueness of one’s audible voice away, at least using current technologies. Computer scientists and rehabilitation engineers are working on the problem of voice for SGD users. Some are working to allow more emotive voices and voices that can be imbued with tonal variety (Hennig, 2016; Pullan, 2009). Others are taking whatever sounds the speech-impaired person can make and extrapolate a voice that might be more truly theirs. The company VocalIDTM claims that with their software BeSpoke Voice TM a speech impaired person need only provide them with three seconds of vocalized sound and from this they can create a synthetic voice that is as unique as fingerprints (Patel, 2013). This is all possible for a mere $1249 US dollars. The unique voice of a SGD may be given, but at a price. Stores One’s Words. To use the chosen voice of the SGD one must of course have something to say and a means by which to say it. The device must house and store one’s words in order to allow them to be selected for voicing. As Melody hoped the device would “store all my words, not just some common ones that have gotten pasted onto my dumb plastic board.” Prior to the computer chip 132 based communication devices, people with severe impairments of speech were often provided with a paper (or in some instances plastic) communication board. Such boards might have the same pictographic symbols that are now used to represent words in SGDs or they might have printed words and/or the alphabet to allow the user to spell words if they were literate. I did have a letter board that I could point to. It worked well with people who would take the time to talk to me; not too many would. To be fair, talking with a person who uses a letter board can be difficult. Most people are unable to put letters together in their minds to form a word. They certainly cannot remember the words long enough to form a sentence (Creech, 1992, p. 47) Prior to the invention of the SGD, communication for people with unintelligible speech was possible, but limited. Talking with text, sometimes written down, sometimes only written in the mind of the hearer. To converse with someone without voice was demanding and burdensome both for the speaker and the hearer. It seems that humans are attuned to put words together into sentences when engaging in conversation. The demand to put letters together to create the words of the sentences may be just too taxing. Letters it seems are for linking one by one in a permanent record of oral language, oral language comes to us in waves of words. Of course people typically speak long before they are expected to have learned to use letters to create text. So, many of these communication boards displayed pictures and words instead of or in addition to the alphabet. But as one can imagine the number of symbols available would be severely limited by a single paper display. The solution for non-spelling users was to have communication books, pages and sometimes scores of pages with symbols and words. Symbols that had to be carried about in a sometimes hefty binder of words, and then leafed through in the hope that someone would pay attention to your attempt to converse with them, an attempt that while having the possibility of communication was without sound. With the acquisition of a speech-generating device that all could change. 133 Offers words to express oneself. Before I got my device I never felt I could say anything that I wanted. But on the day that I got it everything changed. I found more words than I ever imagined! And now I was free to speak those words by myself. Now people can truly know me because for the first time. Now I don’t have to hide a big part of myself like I was before. How wonderful it must be to be given a means to express oneself with the words that one knows but cannot speak. To have the words to say what is in one’s mind and perhaps in one heart. Due to the amazing advances in computer technologies, SGDs can be small enough to fit in one’s hand yet hold thousands words. More words than it may seem imaginable to one who has been confined to using the words pasted into a communication binder. The device it seems lets someone speak for herself in a manner that shows who she really is. This may be like learning a new language, having a few words stored but certainly not enough to express yourself deeply or well. The things I can say in French for example are very limited. I can get by at a very cursory level, saying hello, asking a couple simple questions, how are you? what time is it? where is it? But, to really have a conversation with someone about something on any depth I would be at a loss. My knowledge of the French language is one might say infantile at best. I would never be able to say anything I wanted. That is unless I spent a great deal of time and had a great deal of practice learning the language. Of course, today as an emerging French speaker I too could use a device to help me find my words, to help me translate my thoughts in French so I could speak my mind. On my hand held device I have several apps that can translate from English to French. I can even speak that phrase out loud with my device. The problem is that I am still not really sure of what I am speaking. So while I might seem to be speaking French, I certain understand little of what I might be saying. 134 Here then is the unique offering of the SGD. It presents the words that the speech impaired person already knows for their use. Words that may be swirling around in their mind unvoiced and unsaid. Words that upon being discovered in the program of the device can be used to communicate to the world what one really knows and who one really is. That is of course if one can recognize the words as re-presented on and by the device. Requires Language Learning. In order to be used to speak, the SGD device requires that one must learn both the linguistic code of the oral language in which one is immersed on a daily basis and to learn, find and use the codified language of the device. That year I got my first talking device, which was called a Touch Talker. My therapist, came in to school to teach me how to use it. I feel she did a great job teaching me where the icons were and what they meant. She did not teach me how to express myself with it. For example, one particular day I was sent out of the classroom for drooling but really I had sneezed out some muffin. For the life of me, I couldn’t find the words to say that I had just sneezed. The SGD may restrict the ability to express oneself if the words one seeks cannot be found. What can be expressed is dependent on accessibility of their system and the vocabulary stored within. Despite having the ability to physically push buttons, the demands of recalling where the words to say “I just sneezed!” may remain beyond reach leaving one misunderstood and vulnerable in her silent search for words. Unlike a person who has learned to speak naturally and therefore have acquired their words, a child who uses a SGD is given their words. First the words that come pre-programmed in the device. This may be a few hundred words or more commonly in today’s devices a few thousand. Upon acquiring a device a person must learn how the words are represented and where they are in the system. Then parents, therapists or teachers may add vocabulary (words) into the devices but unless someone is adding every day of the person’s life there is a vast asymmetry 135 between the words the device user knows and the words the device offers up for use (Loncke, 2014). This is an entirely different way of learning to find words to say than a naturally speaking person would experience. As a speaking person we learn our words and in so learning we store them to use the computer analogy in our minds to retrieve again when we are engaging in conversation. Our words are ours. In conversation with a mother of a young device user she tells me that they are busy adding new words to her daughter’s device. And there are 100s of words that she wants to have that are not there. Words like divine, words like horrifying, words like vampire. Her daughter loves poetic language, and she is a fan of all things macabre (perhaps another word she should have!). While her device came programmed with over 7000 words, those words are standard words, common words, and not necessarily the words she has learned from listening to words being spoken throughout her life, and quite possible not the words she wants or needs to express herself. Consider this story of not having the words one needs to say. The nice but serious man came to my house and asked me what I wanted to happen when I turned 18 years old. I told him I wanted my wonderful, loving parents to be my garden ships and when they are too old my very nice and amazing cousin Nicky. The man was very happy that I could understand him and he said it was nice that I had a plan. Despite the thousands of words that have been stored in and added to this young woman’s device guardianship is not one of them, and yet she has found a way to express it using the words that her machine holds –garden and ship – garden ship not quite the word she wants but when spoken aloud by her device happily close enough for her to be understood and for her wishes to be heard. But consider these two words that she has cobbled together, they have no semantic relation to the concept of guardianship. Indeed she tells that I find garden under fall and then in the activity row. Ship is under drive then the activity water vehicles. While the 136 device allows her to generate words she does not have, it certainly demands that she develop a unique path to doing so. One wonders if speaking with or is it through a speech-generating device is like entering into Grand Academy of Lagado (Swift, 1726) and being forced to take up the practices of the learned language professors? As Gulliver tells us in Lagado the professors have decided to save their voices by packing about bags of things to bring out when they were required to engage in discourse with one another. He notes that while many of the wise professors of the academy adhere to this new scheme, there is one not insignificant inconvenience: that if a man's business be very great, and of various kinds, he must be obliged, in proportion, to carry a greater bundle of things upon his back, unless he can afford one or two strong servants to attend him. I have often beheld two of those sages almost sinking under the weight of their packs, like pedlars among us, who, when they met in the street, would lay down their loads, open their sacks, and hold conversation for an hour together; then put up their implements, help each other to resume their burdens, and take their leave. Estimates of the number of words normal nondisabled adult speakers know and can use range between 50,000 and 70,000 (Loncke, 2014). Estimates of the number of words offered up by even the most word rich SGD would be a mere fraction of that number. While clearly the small and portable packaging of today’s speech-generating devices vastly increases the words that can be carried about by people with speech impairments, one wonders if perhaps they too might be burdened by not the weight of their pack but by the sometime unbearable weight of still being at a loss for words. The device may announce itself. I am having a chat with a young SGD user when suddenly alarms go off on her device. Startled and more than a little concerned I ask what is going on. My voice is running out of gas! There is a gas meter. The doo doo doo – you can’t shut it off. 137 I am trying to talk but my body is spazing out on me… It is a race between me and my battery. I am running out of gas. You must plug me in soon or I will no longer speak for you the machine announces not with the gentle inviting voice used to help one select a synthetic voice, but with a loud alarm. In response the young woman enters into a race with her machine that sends her body and quite likely her mind into spasm. The spasm in turn taking precious energy and time, both of which may be in short supply if she is going to get out what she wants to say before the the pronouncement of death of the battery becomes reality. Speech-generating devices come equipped with long lasting batteries, batteries that are meant to see one through a day’s worth of conversation. But yet for a myraid of reasons they may not. Perhaps someone forgot to plug it in last night. Perhaps it is a day where the person using it to speak has been particularly chatty. Whatever the reason, the battery life of the machine is limited. And when it’s limits are close to being reached it reminds one that it must be plugged in. It must be connected to an energy source or silence of both the alarm and the voice of the machine will ensue. We can imagine that our natural voices may speak for themselves on occasion. Our hoarse voice may tell that we have been talking to much being or are unwell. Our voice is under some kind of strain. But it would be a strange thing to have our voice suddenly outright fail us die on us. As our voice is of us not at thing separate from us but is of us, we may tell a friend we need to stop talking for a bit because we need to rest our voice. But it is the person that runs out of steam not the voice. Yet the voice of the device, indeed the device itself, may die at any time. Or at least at times when the user has not paid sufficient attention to its battery life. This could happen in the middle of a quiet interlude in the person’s day, breaking the stillness with a most disturbing 138 alarm or in the middle of a conversation breaking the flow in a most annoying way. The device sounds the alarm… doo doo doo doo doo. How disruptive and indeed how demanding. You must plug me in or I shall no longer carry or voice your words. Yet once it is again plugged in all is well the voice is again empowered. That is, all is well enough if one is content to be tethered to the wall for the time it takes to recharge. Contact There is another kind of power that is not taken by electronic device but that may be given. This is the amazing power of voice to bring us into contact with one another. Calling out to one’s friend with an excited hello announces one’s presence and elicits a recognition perhaps even before one sees the face of the caller. Hearing the voice of a loved on over the telephone brings us into contact with them despite their being thousands of miles away. The audible voice has much power. Something of this power is offered by the voice of the device. The device allows me to reach across the room with my voice. I like to use my talker to bug kids in my class, especially kids like Mike. We were in Science class together. He was sitting right in front of me. I was thinking Boron the moron so I typed it into my device BORON. It was quiet in class so all the kids heard, and everybody started laughing. I could tell by his face he knew I was talking to him- he got all mad and called me a nerd. I called him Boron for the rest of the year! Lingis (2005) reminds us of the extraordinary power this power of voice to put us in contact with another, to reach across an audible space to shout hello or to beckon someone near. And what child has not used their voice to tease another, especially another from whom he seeks particular attention? In this instance the voice from the SGD has allowed this child to reach across the quiet space of the classroom to do just that, to call out to her friend gaining both his attention and perhaps more importantly the attention of the class. The voice from the device 139 allows her to make her presence as a witty and intelligent person heard and duly noted. “Boron is an element you know”, she told me with a grin when she recounted her story. Unlike devices that transform one’s perception of the world such as glasses or the blind man’s cane, SGDs it seems transform other’s perceptions of those who use them. She is able to show herself as present, smart, and one might even say sassy. And with the laughing response to her insult she has made contact not only with the young man she sought to touch with her word but also with her whole class. They all laughed! As I write this piece a new television show has just been aired. It is called Speechless, a comedy about a family that includes a teenage boy who uses an augmentative and alternative communication system - an augmentative and alternative communication system but NOT a speech-generating device. He has a letter and word board that he points to with a laser pointer attached to his glasses. In order for his thoughts to be spoken he relies upon others to follow the beam connect his chosen letters and words into phrases and then speak his words aloud. One of the main tenants of the show is that his family is moving to a new school where he will have an assistant. Someone who his mother says will “be at your side reading from your board wherever you go – a voice”. The promise is that he will at 16 years of age finally be able to speak for himself as he will have a human voice interpreter following the laser beam on the board and faithfully voicing aloud what his is writing. We have early touched on the challenges of a communication displays and letter boards as modes of talking, but in the first episode of this show other aspects can be heard. Upon entering his new class with his “voice” (assistant) duly by his side he encounters a well-meaning but clearly overzealous teacher and classmates who decided without asking him or indeed without knowing him that he should run for class president. Annoyed with this state of 140 affairs he “types” out on his board EAT A BAG OF ----- , but his “voice” (the assistant) flustered by what she is reading says instead “he is flattered and he’ll think about it”. Not his words, and certainly not his intended message. The human assistant has altered his words and clearly his meaning to be more polite, more appropriate. Contrast this to the young woman who called her friend Boron. With a device as her voice she could speak for herself. But what if she would have instead been given a human assistant? What, if anything at all, might have been said in that Science class if she did not have the SGD? Would an assistant reading the word Boron as she was typing it really have shouted that word out across the classroom or would it be more likely that she would have shushed her saying you can’t say that. Or you can’t say that now. Even if an assistant had been true to the calling of being the child’s authentic voice, would the clever retort be attributed to the child from whence it came? The voice from the device will speak what is entered, there is no judgment made, no one stopping it from being said aloud. Judgments and even consequences may arise based on the words emanating from the device, as judgments and consequences arise for any child who speaks out in class. With the device the speech-impaired child is given the ability and the authority to invite them all. Yet the voice from the device may also mask my presence. One time I tried to use my device to call Handi-bus. I called them and somebody picked up the phone at Handi-Bus. I said I want to be picked up this Friday at 1:30. My address is 3 4 5 3 Apple Way. The Handi-Bus person said, “What do you want?” I repeated my message: I want to be picked up this Friday at 1:30. My address is 3 4 5 3 Apple Way. The line went dead. Maybe they thought I was a crankpot ? I don’t know. Anyway, I thought okay, that didn’t work… next… I guess I wait till Mom comes home and she can call them. I think they will know she is a real person. Using his SGD this young man was trying to do what any of us might do on any given day, place a call to another human being to request a service. We may be calling for a taxi or 141 calling for a pizza. When doing so we pay attention to why we are calling, the message we want to convey. Our voice announces us, but unless we have a malady such as a cold or laryngitis, our voice is passed over unnoticed except to bring ourselves into meaningful contact with the other human being on the line. But what may happen if the voice is generated not by a naturally speaking person, but from a SGD? It seems that perhaps the voice itself may have done some of the speaking. Today we may often hear synthetic speech on the other end of the telephone line. “This is your bank calling with an important message”, “thank you for calling someone will be with you shortly”, “estimated wait time is approximately 10 minutes”. A recent commercial for a Canadian bank plays upon this common experience. The woman who is on the phone with her bank comments to her husband on how amazing the computerized voice is. She is then surprised and somewhat embarrassed to discover she is actually speaking with a real person. Contact with computer-generated voices has become such a regular experience that the bank can show itself as unique in providing the human touch – a real human voice. Something that the SGD can mimic but at least as yet cannot produce. Given that even the most sophisticated computer voice still is noticeably synthetic we may in the first few moments of being addressed by such a voice recognize it as computer generated. This is different from what we notice when we have a poor connection. A poor connection can cause us to misunderstand or not hear at all the voice on the other end of the line. But still we are aware that there is a human being actually speaking. When we are greeted with synthetic speech, while we may well be able to understand the message, that is the message is clear, we may from our now numerous experiences with robo-calls or other computer generated speech many of us may be tempted to do exactly what was apparently done by the Handi-bus 142 operator when confronted with a computer generated voice, hang up. A computer generated voice may speak for itself, telling the person on the other end that there is really no one present on the call, but rather what we have come to refer to as a robo-call. We are not compelled to listen, as we may believe there is really no one there with us on the line. The give and take, the amplification and reduction, of the SGD seems here clearly at play. The very technology that allows a speech-impaired person to join in the world of speaking beings has itself spoken on his behalf. Rendering him once again to call upon a naturally speaking person to make the call on his behalf, using the voice of a real person. The Silent Partner? A recent augmentative and alternative communication textbook has the title The Silent Partner? Language, Interaction and Aided Communication (Smith & Murray, 2016). In their introductory chapter the authors explain their title by noting: When a communication aid is introduced into a communication situation, its presence changes the nature of the interaction… Even when it is not actively used within the interaction, its silent presence exerts an influence… The title of this text – The Silent Partner – has been chosen to focus attention not on a communication aid as an entity in itself, but … on how this silent partner role affords and shapes developmental opportunities over time Without perhaps realizing it the authors have pointed to the very important understanding of a SGD not as an object (entity in itself) but as a thing, a silent partner that affords and shapes the lifeworld of one who uses it. This kind of noticing, of the device as a partner in the communication experience, has gone relatively unnoticed and unheard in the field of augmentative and alternative communication. The field speaks of devices as tools (Cook & Polgar, 2008) adopting the instrumental view of the device. Yet it has been shown that the SGD is hardly a mere tool. To borrow the language of Heidegger, it seems that indeed the essence of 143 (this) technology is by no means technological (1977). The essence of the SGD can be found in its shaping of the lifeworld of those who are called up to use it. The SGD speaks for the person who uses it, and it speaks of him. The SGD makes demands upon the user that if met can afford wondrous transformation from a silenced person into a speaker. And as Jeffery Higginbotham, a social scientist and long time researcher in the field points out … more than any other application of assistive technology, speech synthesis is charged with the responsibility to serve as a major expressive modality during social interactions….this responsibility goes beyond that of merely being a tool to convey information Higginbotham (2011) What I have attempted to show with this glimpse into what SGDs do, is that the instrumental understanding is far from complete. And while it seems with the sentiments expressed by the authors of The Silent Partner express this lack of understanding, there is the question if one can understand the SGD as silent. If we focus our attention to the way it offers and demands, expresses and masks, speaks and silences, the SGD seems to have a very loud presence in the lives of those who use it to convey their speeches to the world. To take up once again Ihde’s embodiment relations, one might now ask does the SGD allow one to speak with it as might be implied if it is a partner in the exercise of speaking or does it allow one to speak through it? Does it, can it, ever become passed over un-noticed in its amplification of speaking abilities? Embodiment of a SGD, while apparent, remains far from transparently achieved. For “there is, as yet, no technology that can transform thoughts held in a person’s brain directly into speech” (Venkatagiri, 2010, p. 29). There is, of yet, only ever smaller, ever more powerful, ever more expressive voice boxes that can be called upon to speak for those whose voices cannot carry the burden of audible expression so greatly valued in the daily life of any human being. And so I finish as I have ever begun carefully listening to the 144 voices that are made present through the voice of the machine. It is my fervent hope that you may be called to listen too. 145 References: Adams, C. 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