Let's talk about talking
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This document presents a phenomenological research study exploring the lived experiences of individuals who use speech generating communication devices (SGCDs) to speak. It shares excerpts from interviews and writings of SGCD users describing both the challenges and benefits of using these devices. While SGCDs allow for voicing one's thoughts, connecting with others, and finding identity, the experience also involves difficulties with multitasking conversations and not feeling one's voice is fully their own. Overall, the study seeks to understand what it is truly like to talk using a machine from the perspective of those who rely on assistive technology.
Let's talk about talking
- 1. Let’s talk about talking!
- 2. This session will present a phenomenological research study exploring the lived experience of people who speak using speech generating communication devices (SGCDs).
- 3. What are we talking about?
- 4. Speech Generating Communication DevicesSpeech generating devices (SGDs) are defined as speech aids that provide individuals with severe speech impairment the ability to meet their functional speaking needs.
- 5. Talking machines are everywhere!
- 6. How machines “talk”Recorded SpeechSynthesized Speech
- 7. Applications of Digital Speech for people with Disabilities
- 8. Digital Speech TechnologyDigitized speechText to speech synthesis
- 9. For more than any other application of this (CSS) technology, speech synthesis (and supporting computer tools) 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, it also serves importantly as an interactive tool for achieving common ground and as a means for conveying a speaker’s health, attitude, affiliations, emotion, meaning and identity. Higginbotham (2011)
- 10. Coming to the study…
- 11. My lifetime of AACFrom the Echo (1982) To the iPad (2011)
- 12. AAC PracticeWhat works?How does it work?How can I help make it work better?
- 13. Schlosser (2003)Roles of Speech Output in AACIn AAC speech output has been studied in at least 4 ways:AAC may be part of a larger treatment package.Effects of SGC may be evaluated when comparing treatment packagesSpeech output may be isolated as an independent variable (presence/absence of speech output)Conditions under with SGDs are effectivePractitioners who are faced with the difficult task of matching appropriate communication systems to individuals with disabilities and their environments seek research-based evidence for their recommendations to funding agencies.
- 14. AAC Abandonment/Rejection Even though the intent of an AAC intervention is to enhance an individual's quality of life, research provides evidence that the AAC acceptance does not occur routinely.Discontinuance rate of AT between 8% and 75%Under-utilization?
- 15. So what are we missing?
- 16. The voices of the users!“nothing about us without us”Williams et al (2008)
- 17. Hodge (2007)Why is the potential of AAC not being realized? Exploring the experiences of people who use communication aidsFried-Oken & Bersani (2000) Speaking up and spelling it out: Personal Essays on AAC
- 18. Rackenspergeret al (2005) “When I first got it I wanted to throw it off the cliff”: the challenges and benefits of learning AAC technologies as described by adults who use AACMurphy (2004) “I prefer contact this close”: perceptions of AAC by people with Motor Neuron Disease and their communication partners.
- 19. …This system allowed 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 larger part due to the quality of the speech synthesizer…(Hawking, 2009)
- 20. 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, TED Talk, February 2011
- 21. So I began to wonder?...What is it like?What is it really like to talk with a Speech Generating Communication Device?
- 22. PhenomenologyThe study of the pre-reflective lived experienceIt is the experience not as it is thought to be but as it is lived.
- 23. My questionWhat is the experience of talking with a machine – a speech generating communication device?What is it really like?
- 24. Gathering lived experiencesMy own experiences – 25 plus years in the fieldInterviews and writings of people who use SGCDs to speakWritings, blogs, and videos of experiences of device users.
- 25. A presentation of my preliminary study
- 36. SpeakFirst 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.
- 37. What is the experience of speaking with a machine?
- 38. 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
- 39. 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!
- 41. “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!”
- 42. You know that people sometimes edit stuff in their brains before they say something, while other people just say what is on their mind. Before that day, I felt I had to edit what I was saying twice, once in my brain and secondly with my board order to get people to understand what I am trying to say. That made me not feel free to say anything that I wanted. But 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 not only 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 myself like I was before.
- 43. a new space
- 44. 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.
- 45. “finding one’s own voice”
- 46. 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.
- 47. 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.
- 48. 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.
- 49. But my voice is a machine
- 50. 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.
- 51. 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, near the end of the speech, I became so flustered that I accidentally hit the VERY LOUD SIREN on the Liberator, 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.
- 52. Not everyone at my special school liked my new talker – especially the teachers! During one lesson, the teacher took my talker off my chair. The classroom assistant put it back. They argued, moving the talker up an down like a yo-yo…. I found this battle of wills amusing at the time, but thinking back on it, that teacher was trying to take away my voice!
- 53. To have lost one’s voice is not to keep silence: one keeps silence only when one can speak.Merleau-Ponty, 1962, p.187
- 54. 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.
- 55. So what? What can we learn from such a phenomenological study?Why is this type of knowing important?
- 56. Pedagogical implications:Pedagogy is the activity of teaching, parenting, educating, or generally living with children that requires constant practical acting in concrete situations and relationsVan Manen, 1997, p. 2
- 57. No matter how challenging it may be to develop theories or models of learning, reading, doing mathematics, and so forth, no learning theories, teaching methods, or reading models will tell us what is appropriate for this child in this situation.That is the task of pedagogical theory.van Manen (1997, p. 150)
- 58. Pedagogical implications:How can learning experiences be carefully shaped to be responsive to extraordinary lifeworlds of SGCD users?
- 59. Technological DesignThere are also implications for adoption and development of value-sensitive design practices for the field of rehabilitation technology
- 60. “Humanizing VoxArtificialis”Can we, as scientists (and as educators) see the person behind the synthesized voice? If so, then we need to determine the technical solutions that will make the barrier between synthesized speech and one’s own voice disappearJeff Higginbotham, 2011
- 62. Let’s give them something to talk about!
- 63. Kathy HoweryUniversity of Albertakhowery@ualberta.ca
Editor's Notes
- #2: What is The Experience of Talking With a Machine?Let‟s talk about talking. This session will present a phenomenological research study exploring the lived experience of people who speak using speech generating communication devices (SGCDs). Today, technologies enable speech for people who are unintelligible with their natural voice - for children who are “speechless”. It is technology that enables the ordinary. Something most humans take utterly for granted – the power of speech. But speech is not taken for granted by device users. Their experience of having a voice, a voice that is theirs, a voice that enables, but not quite, the ability to participate in the flow of human conversation, is different. What can we, as teacher and supporters of students who use SGCDs, learn from their lived experiences? How can their words Inform practice and pedagogy in the classroom and beyond? What can we learn from this type of inquiry and why is it important that we do? Kathy Howery, doctoral student at UofA, Educational Consultant. Kathy has worked for close to 30 years in the area of assistive technology, special education and universal design for learning (UDL). Kathy is actively involved in research and practice in the area of UDL
- #6: Toys that talk… greeting cards that speak to you….telephones that announce the calling telephone owner’s name.
- #7: These devices generate speech from text. Text to speech synthesis
- #9: These devices generate speech from text. Text to speech synthesis
- #15: Factors related to the rejection and/or abandonment of AAC devices by Johnson, Alla A., M.S., UNIVERSITY OF NEW HAMPSHIRE, 2008, 69 pages; 1459499
- #17: A handful of studies that gather User perspectives.
- #19: A handful of studies that gather User perspectives.
- #27: 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.
- #28: From the time we are very young children our primary means of communication is through speech.
- #29: We talk with our friends
- #30: We whisper secrets
- #31: We shout and cheer at the top of our lungs and make our voices heard
- #32: We use our voice to share stories across space
- #33: And to tell our stories across generations.
- #34: But consider what life would be without the ability to speak? Without your voice?
- #35: Such is the experience of people such as Dr. Stephen Hawkins. DrHawkin is no longer able to use his natural voice to speak as a result of a degenerative neurological condition.
- #36: Or the experience of people that I have worked with most of my career. People with cerebral palsy who’s bodies do not allow them to coordinate the breath, sound and movement necessary to produce intelligible speech.
- #37: 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 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(Merleau- Ponty , 1964, p. 18). 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.
- #38: So this then is the question of my study… What is it like to speak with a machine?
- #39: A scant 20 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 to form a word. They certainly cannot remember the words long enough to form a sentence 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.
- #40: 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 independent 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! This was a technology 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. Giving speech disabled persons a audible voice in the world.
- #41: But what is this experience… one aspect appears to be that of voicing one’s being in the world
- #42: 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 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. Here 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 as I had recorded the phrases into the buttons that Josie activated to “speak”. What is then speaking with one’s own voice? How very different this experience is for one who speaks with a machine.
- #43: 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 (MP, 1964, p.90) When we speak we reveal ourselves, we even, perhaps, reveal ourselves to ourselves. Is this what Sharlene experienced speaking with the machine? An new found freedom to reveal herself by finding her words.
- #45: 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. From being confined to a confined and 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. The audibility of the word asserts one’s being in the world. 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.
- #46: The phrase “finding one’s own voice” seems cliché
- #47: Consider the words of Colin who has lost ability to speak not through surgery but through the debilitating condition of ALS.
- #48: 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 VOCAsHow interesting then is Colin’s struggle –
- #49: 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 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?
- #51: 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 (Wikipedia). But 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 any longer 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
- #52: 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 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?
- #55: For now, I will leave as I began, carefully 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. 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 human beings, not the technology, can be heard?