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).

Speech Generating Communication Devices Speech generating devices (SGDs) are defined as speech aids that provide individuals with severe speech impairment the ability to meet their functional speaking needs.

Talking machines are everywhere!

How machines “talk” Recorded Speech Synthesized Speech

Applications of Digital Speech for people with Disabilities

Digital Speech Technology Digitized speech Text to speech synthesis

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)

My lifetime of AAC From the Echo (1982) To the iPad (2011)

AAC Practice What works? How does it work? How can I help make it work better?

Schlosser (2003)Roles of Speech Output in AAC In 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 packages Speech output may be isolated as an independent variable (presence/absence of speech output) Conditions under with SGDs are effective Practitioners 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.

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?

The voices of the users! “nothing about us without us” Williams et al (2008)

Hodge (2007) Why is the potential of AAC not being realized? Exploring the experiences of people who use communication aids Fried-Oken & Bersani (2000) Speaking up and spelling it out: Personal Essays on AAC

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 AAC Murphy (2004) “I prefer contact this close”: perceptions of AAC by people with Motor Neuron Disease and their communication partners.

…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)

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

So I began to wonder?... What is it like? What is it really like to talk with a Speech Generating Communication Device?

Phenomenology The study of the pre-reflective lived experience It is the experience not as it is thought to be but as it is lived.

My question What is the experience of talking with a machine – a speech generating communication device? What is it really like?

Gathering lived experiences My own experiences – 25 plus years in the field Interviews and writings of people who use SGCDs to speak Writings, blogs, and videos of experiences of device users.

A presentation of my preliminary study

Speak 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.

What is the experience of speaking with a machine?

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

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!

“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!”

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.

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.

“finding one’s own voice”

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.

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.

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.

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.

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!

To have lost one’s voice is not to keep silence: one keeps silence only when one can speak. Merleau-Ponty, 1962, p.187

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.

So what? What can we learn from such a phenomenological study? Why is this type of knowing important?

Pedagogical implications: Pedagogy is the activity of teaching, parenting, educating, or generally living with children that requires constant practical acting in concrete situations and relations Van Manen, 1997, p. 2

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)

Pedagogical implications: How can learning experiences be carefully shaped to be responsive to extraordinary lifeworlds of SGCD users?

Technological Design There are also implications for adoption and development of value-sensitive design practices for the field of rehabilitation technology

“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 disappear Jeff Higginbotham, 2011

Let’s give them something to talk about!

Kathy Howery University of Alberta khowery@ualberta.ca

Let's talk about talking

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