USSAAC Leaders & Legends: Gregg Vanderheiden

Interview with Gregg Vanderheiden, transcript edited by Deirdre Galvin-McLaughlin

Introduction

Today, we honor Gregg Vanderheiden. As a graduate student, Gregg invented a speech-generating device. He played an important role in both the definition of the field of AAC and the formation of ISAAC. Gregg founded the TRACE center where he directed projects that were instrumental in accessibility features for the past 50 years.

Interview

When were you first introduced to people with complex communication needs? How did that shape your work and got you interested in that area.

How did I get involved in this field?  “I was tricked! “

When I was working in the behavioral cybernetics lab as a research assistant, another undergraduate student, Dave Lamers, came in looking for one of the researchers, Pat, who had been doing eye tracking. Pat wasn’t there so I asked him why he wanted to talk to Pat. He said “There is a boy out at this school who can’t speak or write or type. He has severe cerebral palsy, and I was thinking maybe we could use eye tracking.”  I said, “well, I don’t think that’ll work because, first of all, you have to have all the lights turned out in the room and then you have to bite on a bite-block, and you can’t move -and he has CP. Then it takes about 10 minutes to adjust the little diodes.  That’s not going to work in the classroom”.  So he left and he came back the next day. When I saw him, I said, “well, how did it go?”  He said, I don’t think it’s going to work. And I said, well, I’ve been thinking about it, and you know what, why don’t you try this. And if that doesn’t work, why don’t you try this. And if that doesn’t work, why don’t you try this. He said, he didn’t understand. I explained it again and he said he still didn’t understand. Finally, he said “I have a car outside and it’s not that far away, and it’s a sunny day – why don’t you just come with me and show me?” And the last thing I remember saying is “you expect me to walk out of work in the middle of the day…” but somehow the next thing I knew, I was out at the school with him.

At that point in time, I was a senior in college but had never met somebody with a disability. Now, that’s a hard thing to imagine today, but this is 50 years ago. People with disabilities didn’t have the opportunities to be out and about like they do now.  I thought I was going to find some poor boy who had cerebral palsy. This image I had was from telethons was someone to be pitied and taken care of. Instead, I met a little guy who was 12 years old who was a real character. He had a piece of wood that someone had wood-burned the letters of the alphabet onto. He would slowly point to one letter at a time – about 2-3 second per letter. It was slow but he had an acerbic wit.  So what I found was this kid with all of this personality, no independent way to communicate, do homework or participate in class. When I saw him, I tossed my first idea. When I tried the second idea it didn’t work. Then I tried the third idea, and it worked, but it was slower than what he was doing already.  But I was in. So I ended up going back to the lab, quitting my job, and joining with the guy who took me out there, and we gathered a group of undergrad students to try to come up with a system that worked better for this little boy. 

Dave provided the car. I provided gas money and money for whatever parts I could. Later, we got the department to throw in a little bit of money for parts and we won an award for $500. Students from other parts of the campus heard about what we were doing, and the group grew with students from engineering, communication disorders, special education, journalism, and occupational therapy. 

There was a professor, Dr. Richard Marleau, who had an Analog computing lab that he taught classes out of it. We had no place to meet to work on this so, he took all of his computers out of the lab and moved the computers to the back of a storeroom. He then taught his class out of the back of the storeroom so that we would have a place to meet. Without this quite amazing action by him I don’t think we wouldn’t have had the numbers of people come together – and all of this might not have come about.

So we just started working on a solution for him. In those days the National Science Foundation had a Student Originated Studies Program and so we applied for that.  That was our first federal funding for or student group.

When we demonstrated our “auto-monitoring communication board” on a telethon, all of a sudden, we had all these people writing to us from nearby states. They would say I’ve got a son or daughter or student that this system would help. We suddenly found ourselves working not just for one person, but for four and then five, and then it just kept going.

Eventually this student group grew into the TRACE Center. 

Later, I figured out that Dave (the student who talked me into going out to the school and was a senior in electrical engineering) probably did understand me when described the three ideas back in the lab at the start. All he wanted to do was to get me out of the school because he knew that if I met this boy, that I would be hooked.  And did and I did.  And the rest is history.

I believe you were one of the people who popularized the term augmentative and alternative communication, How did that happen and how would you define AAC today?

The term “augmentative communication” came from something that I presented and then wrote. In 1978, Richard Schiefelbusch held a workshop in Gulf Shores, Alabama on non-speech communication. Dave Yoder, one of my doctoral advisors was invited. He asked if he could bring two of his doctoral students, Deborah Harris and me, to the meeting. I think we were the only students invited. Dick said yes and allowed us to come and present.

Deb presented all her research from the language and child development perspective, and I presented on the different interface approaches. At the time, speech pathologists were actually being fired for using communication boards. The reason for that was that in the medical field you’re not allowed to practice outside your specialty or scope of practice, and they were “Speech” Therapists not communication therapists. 

So, what I was trying to counter that by arguing that these systems are not alternatives to speech. That these techniques were not used instead of speech- they were used to augment speech. If a child could speak and somebody could understand them, they were going to use speech because it’s so much faster if at all understandable – even if only to one person. Using the communication board is really slow. And all of the clinical reports were that communication boards did not reduce vocalizations if the child had any useful utterances. In fact, it increased them. And because they had a communication board to fall back on, there was less pressure when they spoke, and they were also clearer. 

This workshop led to a book – and in one of the chapters, I talked about this. I’d called it “augmentive communication” at first.   But the book editor came back and said there’s no such word as “augmentive”. So I went and looked it up in an unabridged dictionary, and they were right. But there was the word augmentative. So, I just changed it to augmentative communication. 

When we came around to forming and organization around this, we were trying to figure out what to name the field.  Lyle Lloyd argued that it shouldn’t be augmentative communication, it should be alternative because some kids didn’t use speech at all. The group had a long back and forth discussion about which it should be, and in the end decided on “augmentative and alternative communication” because it included both approaches.  

 What were some major successes you’ve experienced in the field of AAC?

We started out traveling to visit the few groups around the country that were engaging in this work to learn all we could.  In the end we felt that the information was so “fugitive” (hard to find) that we proposed to do a national workshop series to share all that we had learned and all that we were doing. We initially did one each in Chicago, Boston, and Los Angeles.  There were so many requests for more that we expanded it and did a total something like 30 workshops to over 1000 people here in the United States and England.  It turned out that was something of a watershed for AAC and instrumental to people becoming interested and adopting it.  Later, we found that many of the leaders in augmentative communication got started in AAC because of what they heard at one of those workshops,

Later, when personal computers started coming out, we did a repeat of this and carried out a national series of workshops on computers and disability. By the 1980’s there were enough people doing augmentative communication and making products that we (the Trace center) felt Aug Com was getting pretty well established. But computers were rapidly being adopted and work was needed on computer access.  So Trace move over from Augmentative Communication – to shift our focus to computer access

By this time it was very clear that, although personal computers were mostly a hobbyist thing at the time, they were very quickly going to be central to education, employment and everything else. One of the problems back then was that you couldn’t easily adapt computers in a way that people with disabilities could use standard software. You could physically do things like install a keyguard or put a latch on the side that would hold down a shift key, but computers only ran one program at a time, and software directly read the hardware components (e.g. the keyboard encoder) so AT could not function like it does today.  So we set out to create solutions that would provide what we called “transparent” access, or access where software could not tell that you were not using the standard keyboard (and later mouse) even though they were using morse code, or scanning or something else. 

One of the most amazing solutions that provided transparent access was created by Paul Schwejda and Judy McDonald. Paul was a Physics PhD who was driving a cab driver when he met Judy McDonald while sharing a table at a coffee shop. Judy was a speech therapist who was working with the kids who had disabilities in education and communication. They struck up a conversation and Judy mentioned her job and the students in the classroom she worked with.  This conversation continued when Paul “accidentally” kept running into her at the coffee shop.  Paul began going to the RadioShack store and teaching himself how to program, wrote a communication program for her to use with her students. Then he dragged her over to the RadioShack store one day and showed it to her. That began a collaboration that led to one of the seminal developments in the field of early computer access.

The amazing thing is that Paul taught himself computer programing, digital logic, circuit design and more in order to create what came to be known as the adaptive firmware card. This adaptive firmware card (AFC) plugged into an Apple IIe and added both special input techniques and transparent access to all software.  The AFC would interrupt a program to pause it whenever it tried to read the keyboard – and then he would fool it into thinking a keystroke from the special access program came from the standard keyboard. With this, he was able to create a multitasking computer that had all of these different adaptive features that the user could use with standard programs.  It could then be use both for communication and for writing, homework and even playing games.

What are some major challenges you’ve experienced in the field of AAC?

Well, in the beginning, a challenge was getting recognition for the field

As I said, that task was mostly carried by other people, David Yoder and others.  My work was more along the line of “let’s figure out how to do it”.

Another challenge was getting funding in the beginning…  

Funding for assistive technology was mostly limited to medical aspects (prosthetics, orthotics, physical rehabilitation). So funding for Aug Com and computer access was a challenge.  After the first year or two I had about 30 people in the center and needed to find funding to cover our work. I never had funding for everyone for more than six months forward from any point in time. And I had to assemble funding from a 15 to 20 sources. So, it was always continually a challenge to keep projects supported 

Another challenge was getting accessibility features into major products.

In the beginning, there weren’t any accessibility laws or regulations.  The only way to get any access in was if a company would pick it up and decide to do it on their own initiative. AT companies would pick up ideas – since that was their business.  But getting something into a mainstream technology was almost impossible. 

The success the TRACE center had transferring accessibility features to mainstream technology (we have almost a dozen features build into mainstream computers) is because of a key people within companies. At Apple, we had Alan Brightman, who laid the groundwork for integrating computer access tools. Greg Lowney did the same at Microsoft. Then we worked with the companies’ engineers to show them that a) these really helped people and b) it wasn’t hard to build them in.  In the end we were able to create access features that are built into every operating system, computer, and smartphone. You find these features everywhere now. 

One thing as advice to anybody is that if you never fail, then you’re not really trying to do anything very hard. And when you fail – just keep trying. It seems trite – but it is true. All of the advances we are known for happened after failing repeatedly first.  And when you succeed, don’t say, oh, I succeeded because it was a good idea. Try and figure out why you succeeded this time – but not every other time.

I have to say – It was really hard to leave the field of augmentative communication and to shift into computer access. In Aug Com I was surrounded by the most amazing group of people, and it was like a family.  You worked with clinicians and teachers and AAC companies who all were interested in what you were doing. It was their job and passion.  In computer access, their passion was someplace else, and you had to generate all the interest in them by yourself. 

With Aug Com it was delightful to watch the whole field just blossom and grow with so many people in so many places that doing so many great things and the collegiality of that field. That was the great joy to see and in.

One of the other things that characterizes the field of AAC is people who are always trying to grow the people around them. People with disabilities, people entering the field, and students. They’re trying to grow people with this ability, to help them to thrive. Look at David Yoder. He gets invited to this Gulf Shores meeting and to write a chapter and what does he do? He asks to bring a couple of his grad students with him. He didn’t have to do that. He could have just said gone to the meeting shared what we were doing himself. But no – he asked to have us come – and present our ideas and give us a platform. And it wasn’t just us. Whenever he got the chance, he took others and helped to raise them up and caused them to be recognized, and that’s not typical.

Is there anything you wish you could have done differently?

I’ve made a lot of mistakes. And there are some things that I thought were terrible at the time they happened. But I figure that if you like where you are, you should not try to go back and erase any of your past – because then you wouldn’t be where you are or who you are. Your failures shape you. Your disappointments shape you. Your tragedies shape you. So no, I can’t think of anything that I wish that I could go back and undo.  (There are things I won’t do the same again!)

How has the field of AAC changed during your career? What do you see as the major milestones affected?

When I started, we didn’t have integrated circuits or microprocessors, so the first augmentative communication aids were made of relays, diodes, and a couple TTL chips. 

In the beginning, there were only a couple small mom-and-pop style of companies often with 1 product.  Prentke-Romich was pretty much alone in the beginning as far as trying to create a range of products. There were also people like Bev Viker and Schultz-McDonald and in Canada, the Shirley McNaughton et all andBliss project that did amazing things with communication boards. But almost no-one knew about them. So, there was a phase where almost nobody knew about communication aids and what could be done. The workshop series that we did was done to help address this.  And it did and the field began to expand.

Then, there was what I would call “the great inventive period” where all of a sudden you had this pent-up need.  So when we spread information about the early work being done, teachers and clinicians and parents and even consumers pumped the life into it. They took all this information and found new ways to apply it – and spread it to other people. And we saw a blossoming of new information and new aids.  We then saw our role as not helping people directly so much anymore like we did in the beginning (though we still ran a clinic), but rather we saw a new key role as just getting the word out about what everyone was doing.  

Then I would call the next phase was the “maturity”. That’s when the field started to be able to reach deeper into different types of disabilities and how to serve people with multiple and more severe disabilities.

And now we’re actually in a position where we’re very close to having a little leap – where technology is now going to play a role that it couldn’t play before. I was speaking with Janice Light about using some of these new AI technologies that will allow a kind of like a quantum leap for the field. 

 It’s not only important that people have a basic ability to speak. It’s important to be able to really communicate – and be able to productively use what they know – and that means they need to be able to write and communicate not just with the people around them but with the broader digital world. 

We saw a blossoming of that with the Internet. How many of our colleagues with disabilities had their world opened up as soon as they were able to get access to the Internet and they no longer had to rely on just a small number of family, friends, or clinicians in order to access the world. 

We need to figure out how to make AAC expand from person-to-person communication to broader communication in words, videos, text, blogs, conferencing and more.  We need to move beyond the medical model of “give them the ability to speak” and to a functional model that includes all forms of communication. 

And we need to ensure these technologies are available and affordable in developing countries. 

I also think we need to have a renewed emphasis on what I call elegant technologies. The old-fashioned communication board and things like the ETRAN board (a piece of plexiglass where people look at choices). They are effective. They are elegant. These fundamental technologies need to get back into the mix. Those are robust solutions. 

On a final note – at the other end of the spectrum I just did a two-day workshop I co-chaired with Vint Cerf called “the future of interface”. We brought together the best minds from around the world, to look at where these technologies are going – everything from direct brain interfaces, VR and AR, and machine vision – and how to make them accessible.  There is no time here, but you can learn all about it at https://futureofinterface.org .

What do you envision the AAC fielding community will be like in the near and distant future in the last?

 I keep thinking that what we’re really trying to do is to help people not just communicate or write, but we’re helping them to live fulfilling lives.  All of these things we’re doing is a step toward that. 

So I think in the future we need to figure out two things.

One, how to do a better job of letting people access the entire information world.  With new advances we will be able to circumvent things that are blocking people from being able to do that today.  We’ll be able to have more power to adapt things to be like we want them to be, or like we need them to be, in order to allow all of us to use it.  This includes cognitive, language, and learning disabilities in ways we can’t today.

Right now, we are designing a world that works better and better for people who are brighter and brighter. Many assistive technologies are only useable by people with higher cognitive functions.  In our work we have discovered that many people have trouble using both computers and accessibility features due to complexity.  

I have something I call technical affinity and it’s “the ability to understand and use technology”.  And this is more like a talent than to a skill. Some people know how to draw, and other people can’t draw to save their souls. Some people can sing, and some can’t. Some people are athletic, and some aren’t. Well, the same thing happens in technology. People say that people can’t use it because they just they don’t have digital literacy – but I’m talking about digital natives who can’t use technology. And it’s not an intelligence thing.  There are people who are the top of their field, but they can’t figure out how to use their technology. National award winners in their field who can’t figure out how to use Zoom reliably. It’s not brightness, it’s just some people don’t have the talent for technology.

So here is the problem, what makes lack of digital talent so different than lack of any other talent.  If you can’t sing, it doesn’t affect you getting a job (except as a singer). Ditto for drawing or athletic talent. But if you can’t use technology. What job can you get?  They all require us to use technologies today – and a low ability will either prevent or impede our ability to do most jobs. 

So this is something we have to recognize – because we are creating augmentative communication aids that are more complicated – and not realizing the implications. 

We need to recognize digital affinity as a real thing, and that as we make things complicated, we actually disable people, people who used to live independently that can’t anymore.

So as we learn and with new emerging technologies to work with – I see a very bright future for our field – and one that will allow us to reach and server an every wider range of people in ever broader aspects of life and interaction.