!empowermentthroughtechnology:! … · 2014. 11. 14. · !empowermentthroughtechnology:!...

Empowerment through Technology:

Breakthrough with Augmentative Communication

By Brian Kajiyama

Excerpt from

a Comprehensive Intervention Paper

submitted to the Graduate Faculty of the

Department of Counseling and Guidance of the University of Hawai`i

in Partial Fulfillment of the Requirements for

the Master of Education in Counseling and Guidance Degree

Summer, 2007

Brian’s Perspective: Empowerment Through Technoloogy of 13

Empowerment through Technology in Action:

A Personal Perspective

In order to better serve consumers they work with, VR counselors must consider the

important role of AT in the rehabilitation process. Beyond the improved access to technology

prescribed by the Tech Act and its amendments, many counselors lack knowledge of the

different ways in which technology can empower and enable their clients. In order to facilitate

a change in attitude towards assistive technology, specifically augmentative communication,

the author of this paper will present personal experiences.

I am a person with a disability, as I have cerebral palsy. My speech is unintelligible.

Mentally, I measure at normal intelligence – I was in regular education settings for the majority

of my schooling. Throughout my life, I have used many forms of communication. This section is

intended to provide an intimate presentation of an augmentative communication user’s

journey to find “voice.” Specific attention will be given to: a) communication prior to obtaining

an augmentative communication device; b) the challenges faced in obtaining an augmentative

communication device; c) opportunities that have opened up because of augmentative

communication; and d) the implications for increased employability through the use of this

technology.

Communication Prior to Obtaining an Augmentative Communication Device

Throughout my journey as a student in secondary education, I did not have an

augmentative communication device with speech output. I relied on non-‐verbal forms of

communication. My means of communication included a letter board, text-‐based programs on

a computer, and paper and pen.

A simple board on cardstock, with the alphabets and numbers in block form, was

attached to my table on my motorized wheelchair. By pointing to letters on the board, I would

communicate my thoughts to another person. The person, with whom I communicated, had to

remember each letter I pointed to in order to form a word. This definitely had an impact on the

audience with whom I communicated. I was unable to communicate with individuals who

could not read nor see. I also could not effectively communicate with people who had

cognitive challenges, as it took effort to remember each word I spelled in order to compose a


sentence.

My audience was limited and comprised of friends and family, people I knew very well.

During my journey through secondary school I only had a few friends. My friends and I were a

tight knit group, as we would enjoy extracurricular activities together aside from being in the

same classes. The method of communication I used became transparent to them.

Communicating with people who were not in my “circle of friends,” proved to be more

difficult. Once I gestured to the person I was interacting with to explain how I communicated,

the person had to get accustomed to remembering letters to create words, and then words to

create sentences. I was very aware of this and kept my answers concise and to a minimum.

For instance, if someone asked how my day was going, I would often spell out, “good,”

and hesitated going into detail. This significantly affected my level of communications with

others. When my audience engaged me in questions, after the second question I would notice

that interaction would cease, as it appeared that many did not have the patience to endure

another period of silence while they waited for me to spell out the answer.

When I had access to a computer, I would use text-‐based programs to communicate my

thoughts and needs. I utilized word processors, e-‐mail, and instant messengers. My ability to

type with one hand proved to be invaluable.

Through computer text-‐based environments, my communications were far richer than

using a letter board, it still relied on having someone else “read” my thoughts and ideas. E-‐mail,

instant messaging, and web-‐based chat environments were my electronic communication

methods of choice. By employing this format, the “playing field” was somewhat leveled. I

could type as well as anyone, despite having the ability to use only my right hand. However, I

could not engage in a flowing dialogue, as lag time was inevitably part of the process.

For everyday communication, while I was at school or in my community, I resorted to

paper and pen. I carried a pad of paper with me everywhere I went, since it was very compact

and easy to transport. I also made sure I had a pen on my person, so if I had a thought or need

to communicate, I could write it out. Then I would hand the pad to the person I was

communicating with. My handwriting was hard to decipher at times, making it hard on the

reader. It also took a significant amount of time and effort for me to write, so I would be very

concise with my communications. I avoided explaining things in detail, for I was aware of “dead


air” and how that impacted the effectiveness of the message I was conveying. When people

communicated with me, I could sense a feeling of hesitation on their part, for they knew asking

me further questions would result in further silence, as I wrote.

When I participated in class discussions, I would write my thoughts on paper and pass

them to my note-‐taker to verbalize. This allowed me to be an active participant in class, but it

was difficult to keep up, as someone else might share my idea while I was still writing. There

also might have been a perception that I was not doing the “thinking” for my course work since

my thoughts and ideas were spoken by another person. This was a case where the “voice” was

literally someone else’s thought the thoughts were mine.

Challenges Faced in Obtaining an Augmentative

Communication Device with Speech Output

When I first met with my counselor at the Hawaii State Division of Vocational

Rehabilitation (DVR) to draft my Individualized Plan for Employment (IPE), there was a

discussion about augmentative communication devices. DVR offered support for funding. At

that time, since there were no devices that I really embraced, I asked if we could list this as a

support to consider in the future. The VR counselor agreed and it became part of the support

services listed on my IPE. There was an understanding between both parties that should I find a

device I felt would be helpful, I could contact DVR for their assistance.

I began pursuing an advanced degree, and soon connected with Dr. James Skouge, a

professor in Special Education at the University of Hawaii at Manoa’s College of Education. Dr.

Skouge is an advocate and believes in the power of assistive technology. He would often ask

me why I did not have an augmentative communication device. I had tried augmentative

communication devices with speech output but was not satisfied with the quality of the speech

synthesizers. I knew that I would not use a device that I did not embrace wholeheartedly. My

communications seemed to work just fine for me, or at least I thought.

During a conversation, Dr. Skouge told me, “You really need to reconsider using an

augmentative communication device. Not having a voice that can be heard is not cutting it,

friend.” He went on to say, “Humans respond to voice.” It was at that point that the proverbial

light bulb went on in my mind. I was ready to entertain the idea of using an augmentative


communication device with speech output.

Only a few days after Dr. Skouge and I had that conversation, a representative of

DynaVox, a company that manufactures augmentative communication devices came to visit.

The representative demonstrated a device called the DynaWrite. Immediately, Dr. Skouge

knew I would probably embrace this device, for it was small and compact, easy to transport,

and had a synthesized voice that sounded human-‐like.

DynaVox agreed to provide me with a loaner DynaWrite to use for the remainder of the

semester. I immediately noticed how easy this device was to operate and felt very comfortable

with the synthesized voice. I tried to find something that I would not like about the DynaWrite,

but could not find anything I was unhappy with. I ultimately realized that this was the right

device for me.

I immediately contacted my VR counselor and excitedly reported that I had found an

augmentative communication device with speech output that I could finally embrace. I was

ready to accept DVR’s assistance. This began a long and arduous journey to obtain a DynaWrite

that I could call my own. My counselor and I went back and forth for two years, debating if I

really needed a device or if the one I had chosen was the “right” one for me. I was told I had to

be assessed by a speech therapist twice, and I was very agreeable so I went. I was asked to look

at other augmentative communication devices with speech output at a local vendor, and I

went. I did not find anything that was comparable with the DynaWrite and reported back to my

counselor.

After doing all that was asked of me, no progress was being made. DVR insisted that I

should go with a device that was sold through a local vendor. I held steadfast to my feeling that

the DynaWrite would help me achieve my academic and career goals. Though the process

became extremely lengthy, I remained patient and polite, as I called weekly to check on the

progress of my request. My counselor’s supervisor insisted that I had to go with a device made

by a company that had a local presence here in Hawaii; DynaVox did not have a local vendor.

After going through the many hoops and hurdles asked of me, I became frustrated. I

decided I had to take another course of action, if I was to obtain the assistance I was entitled to.

At this time, I had just started keeping a “blog”, which is the short form of “weblog,” a form of

public journaling on the World Wide Web. I could freely share my thoughts and feelings


through this medium. After much thought and consideration, analyzing the ramifications of my

proposed action, I proceeded to compose an entry expressing my frustrations with the process

of obtaining an augmentative communication device. I carefully avoided revealing any names,

and did not accuse anyone of any wrongdoing at any time.

I posted the following entry on January 24, 2005:

A very rare time that I’ll compose an entry on consecutive days. But it’ll be an

interesting read, I assure you. I like to think of myself as a nice person, I always try to do

good, do the right thing, treat people with respect. I certainly don’t try to be mean or

do bad to anyone. You’d think I’d have good karma, or whatever you believe in…

Last night I received an e-‐mail regarding my augmentative communication device. It

wasn’t a bad note, in fact it was a positive one. Someone had received a DynaWrite

through the Division of Vocational Rehabilitation (VR). “Great!” one should think. It’s

great except for one minor detail…I’ve been patiently waiting for over a year to receive

my device, all the while trying my best to convince VR that they should support this.

Finally VR is convinced, but yet there’s a bunch of hoops that I was asked to jump

through. I DO all they ask of me…now it has become a waiting game, “pass the buck” if

you will. Come to find out, a VR counselor was able to order a device for someone in

less than a week’s time! How can there be such a huge disparity in this idea of “delivery

of services”?

What exactly am I missing here?! Something is definitely askew in this picture. It’s like

someone has punched me in the gut or played a very sick joke on me…

I write this entry as I cope with a migraine headache, definitely brought on by self-‐

induced stress. What do I take away from this? I MUST learn to deal with stress better,

don’t let situations affect me so much.

Does this mean I’ll start being not nice, more “mean” in my attempts to advocate for

myself? Probably not. However, I will question my competence in advocacy until I


receive the support I am entitled to. A year plus in my eyes, is NOT considered “timely”

in terms of delivery of service (http://bkajiyama.blogspot.com).

After I posted that entry, a friend and AT consultant, Sterling Krysler stepped in

and became my advocate. He contacted the administrators at DVR and directed them to

read this blog entry. The administrator at VR at this time was appalled and commented

that this should never happen.

This administrator directed my counselor to read this blog, and then proceeded to

direct the entire staff of DVR to read my entry, noting that my situation exemplified what

should not occur. Soon after, I received an e-‐mail from the supervisor of my counselor,

chastising me for sharing my feelings in a public venue. The supervisor felt I should have come

to my counselor first with such feelings.

I did not know what to think, as I openly communicated my frustrations each and every

time I communicated with my counselor and with DVR. The blog entry and the attention it got

finally made me “heard”. A few days later, my VR counselor notified me that a DynaWrite had

been ordered. A week later, I received one of my own. I was happy, but also concerned that

other VR clients who are entitled to assistive technologies not to have another person go

through what I experienced. I was fortunate to have advocates and a venue to write my

thoughts, but not everyone with a disability would have these supports in a situation like this.

Opportunities Developed from having an Augmentative Communication Device

Many opportunities have developed as a direct result of my having an augmentative

communication device. My most poignant moment came one day while I was working in Dr.

Skouge’s office in the College of Education. A fellow student in the College wandered in.

“Hello, my name is Robert,” the student said.

“Hi, my name is Brian. It’s nice to meet you, Robert,” I replied.

All of a sudden, I realized I was engaging in a concept that had been so foreign to me for

the majority of my life. I was having a conversation with a complete stranger! We engaged in

small talk for a while. Then as Robert prepared to leave, he said, “It was great to meet you

Brian. I will see you again soon.”


“Thanks Robert, it was great talking to you. Have a great day!” was my response.

It felt wonderful to wish someone well, as I know how much it brightens my day when

someone does the same for me.

As I had been “silent” for the majority of my life, I had to learn how to become sociable

with this new “voice” that I now had. It was unrealistic to expect I would become a social

butterfly overnight.

I was fortunate to have a great support system to allow me to develop social skills; I

found this through Dr. Skouge’s mentorship. He invited me to become an intern in his office,

and I found myself interacting with staff and faculty in the Special Education Department at the

College, I was a teaching assistant with a course that Dr. Skouge taught each semester called,

“Technologies for Students with Disabilities,” and I was challenged to do class presentations on

occasion for this course. I was beginning to feel comfortable with my ability to “speak my

mind.” I felt empowered.

Other opportunities arose which empowered me even more. I was invited to do

presentations in my community, which soon turned into opportunities to present on a national

platform as I attended conferences in such locations as California and Washington, DC. My

audiences appeared to enjoy the messages I shared, which mainly was, “empower persons with

disabilities with a voice.”

I soon found myself delivering messages of motivation to sports teams at the University,

particularly the men’s basketball team and women’s volleyball teams. People finally could

“hear” my thoughts, instead of just reading them. This provided me with a feeling of being

empowered. No longer did I need to rely on others to be my “voice.” I had a voice that people

were responding to in positive ways.

During class discussions, I could actively participate on a level that I never experienced

prior to having an augmentative communication device with speech output. I could now share

my own thoughts, at any moment I so chose, without having to rely on my note-‐taker. Class

presentations became more meaningful and enriched as I could control what I wanted to say

and when I wanted to say it for myself. I have become a better student, as I have the ability to


better fulfill requirements for my master’s degree in Guidance and Counseling, with an

emphasis on VR counseling. My interactions with clients have become far richer and more

effective. This demonstrates that technology has empowered me to better reach my goals as

set forth in my IPE.

As a direct result of being empowered through AT, specifically augmentative

communication, I have become a more active member of my community. I am actively serving

on State appointed boards and student organizations at the University. I have been able to

develop the skills necessary to become a successful professional, being able to interact with

colleagues at the College of Education on a regular basis.

All of these opportunities of empowerment have served to develop me into a viable

employee. It is my hope that I will become a professor at the University. I feel empowered to

achieve this goal, as I was provided with the necessary AT to do so, specifically an augmentative

communication device with speech output.

Increasing my Employability through Technology

As the goal of VR is to enable consumers to obtain gainful employment opportunities, I

believe that I am in a position to achieve this. My augmentative communication device with

speech output has empowered me with a voice. I no longer

need to rely on others to speak for me.

I recently was hired by the University of Hawaii’s football team to be a graduate

assistant for the upcoming season. My role will be to help breakdown videos of future

opponents to aid the coaches and players in preparing for games. I began doing this on a

volunteer-‐basis last season. The head coach of the team, June Jones, recognized my abilities

and felt I could be an asset to the team and offered me the position.

Last season, I worked closely with the defensive staff, interacting with them regularly. I

shared information that I acquired by analyzing film of opponents. Coaches would sometimes

request specific information. All of these scenarios required active communication, meaning

they wanted answers quickly. My augmentative communication device allowed for a flowing

dialogue. My relationship with the staff went beyond a professional aspect, as I quickly became

friends with all of the coaches. We would sit and have conversations unrelated to the task at

hand, and eventually they viewed me as being an equal. They did not hesitate to ask me


questions, for they knew I could respond verbally, through my device.

My personal experiences serve as an illustration as to the importance of AT, specifically

augmentative communication with speech output. Through technology, I became empowered

with a voice that could be heard. In turn, this enabled me to feel empowered to try and

achieve goals that I might have thought were impossible.

Conclusions and Recommendations

Based on the review of the literature, combined with my personal experiences, the

author proposes the following recommendations to further the VR counselor’s understanding

and use of AT, specifically augmentative communication, in the lives of the people they serve.

These recommendations serve to provide awareness, knowledge and skills. Werner (1987)

believes that by sharing knowledge and skills, VR counselors will be able to impact many more

lives of persons with disabilities.

Awareness is defined by Merriam-‐Webster’s Online Dictionary as “having or showing

realization, perception, or knowledge.” Additonally, Sue et al. (1982) suggests awareness refers

to a counselor recognizing “his/her own values and biases and how they may affect minority

clients” (p.49). In order to better serve the consumer, counselors can increase their awareness

through the following activities:

1. Examine current attitudes towards technology in general. Acknowledge any fear

that might be present, and take action to overcome those fears. The action

could be taking a course on AT.

2. Become more aware of AT by attending as many conferences and exhibitions as

possible. Learn about as many products as possible.

3. Recognize that cultural factors will play a role in a consumer’s inclination to

utilize AT, specifically augmentative communication, as some cultures do not

value speaking out. Respect cultural differences. Knowledge is defined as “the

range of one's information or understanding” (Merriam-‐Webster’s Online

Dictionary, 2007).

Increasing one’s knowledge, as it relates to AT, in general, and augmentative

communication, in particular, will enable VR


counselors to have a more complete understanding of how they can better empower

consumers with these tools. Further, the competent counselor must possess “specific

knowledge and information about the particular group he/she is working with” (Sue et al.,

1982; p. 49).

The following recommendations are offered to specifically increase knowledge for the VR

counselor:

1. Review the Tech Act and consequent amendments. This will empower, you, as a VR

counselor, to better advocate for AT on behalf of the consumers you serve.

2. Share the information you learn about AT with the consumer. Allow the consumer to

test out AT that he or she might be interested in.

3. Further develop your understanding of how empowering AT, specifically augmentative

communication devices with speech output, can be in the lives of the consumers served.

4. Be cognizant of informed consumer choice. Review any guidelines related to this as

needed.

VR counselors possess a multitude of skills that they utilize when working with the

consumers they serve. Merriam-‐Webster’s Online Dictionary (2007) defines skill as being the

ability to use one's knowledge effectively and readily in execution or performance. Sue et al.

(1982) add that a culturally skilled competent counselor “must be able to send and receive both

verbal and non-‐verbal messages accurately and ‘appropriately’” (Sue et al.; p. 49). To achieve

successful outcomes, VR counselors must use their skills to enable the consumers to become

empowered through technology.

1. Encourage the consumer to actively explore options for AT on his or her own. This will

foster a sense of ownership within the individual.

2. Actively listen to the consumer; specifically observe if the individual is open to the idea

of utilizing AT. If the consumer is not ready for AT, do not force anything upon him or

her. By forcing a consumer to use AT, there is a high chance that he or she will put up

resistance.

3. Honor the consumer’s decision to pursue a specific piece of AT, especially if it is part of


the IPE. You could ask the following questions to ensure that the consumer is making a

informed decision:

a. Have you had the opportunity to use the device in everyday settings?

b. Have you explored other devices?

c. Why do you feel this device will work best for you?

d. How will this device allow you to better reach your goal, as set forth in your IPE?

4. Ensure the consumer is an active participant in all planning meetings. Provide the

necessary accommodations to aid this.

5. Provide the consumer with opportunities to connect with role models in his or her

community who are using AT, specifically augmentative communication. By doing so,

you will serve to broaden the consumer’s perspective of what is possible.

6. Encourage the consumer to pursue opportunities to be heard. Whether it is public or

web-‐based forums enable persons with disabilities to get their own “voices” out for all

to hear.

7. Empower consumers with a voice that can be heard.

The scope of assistive technology has expanded with advancements in

technology. The Tech Act and the Amendments of 1994 and 1998 entitled persons with

disabilities to receive technological supports. VR counselors are charged with the responsibility

of enabling persons with disabilities to become gainfully employed. AT can be a vital

component in the process of rehabilitation. Persons with speech impairments require a

specialized form of AT, augmentative communication devices, to allow them to be productive

members within their communities.

In a society dominated by verbal communications, augmentative communication

devices provide for a more inclusive environment. Persons with speech impairments are

empowered with a voice that can be heard. Society will be able to benefit from hearing the

thoughts and feelings of people who have been viewed as silent. Higher education,

employment opportunities, and opportunities to share their unique stories have become

reality.

By providing persons with disabilities, particularly those with speech impairments, with


augmentative communication VR counselors will empower them with a voice. By being

empowered with augmentative communication, persons with speech impairments will be able

to experience a breakthrough and have their voices heard. Ultimately, persons with disabilities

will be able to effect positive change in systems such as vocational rehabilitation.

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