Speaking Up and Spelling It Out [Paperback]

Melanie Fried-Oken (Editor), Hank A. Bersani (Editor)

Book Description

Publication Date: March 17, 2000

Going beyond the typical augmentative and alternative communication (AAC) issues explored in most textbooks, this essential collection gives readers the opportunity to hear AAC users talk about their lives. Twenty-eight diverse individuals who use AAC, from teens to senior citizens, give first-person accounts of how living with AAC has affected them. Through their personal essays, poems, and interviews, readers will hear their perspectives on the issues that matter most to them, including education, employment, technology, and family. The contributors reveal what using AAC is all about and what works (and doesn't work) for them as they face the daily challenges of communication. These touching and humorous stories will give everyone - particularly AAC professionals, speech-language pathologists, therapists, educators, families, and friends of AAC users - insight into how to improve communication supports for the people they care for, from AAC users themselves. And all readers will rediscover the value of communication in their lives.

Editorial Reviews

About the Author

Melanie Fried-Oken is Associate Professor of Neurology and Pediatrics at Oregon Health Sciences University. A speech-language pathologist at work, Melanie wears three hats: Director of the Assistive Technology Program at the Child Development and Rehabilitation Center; Principal Investigator on a University Affiliated program training grant entitled OTTR; and Clinician and Director of the Augmentative Communicaiton Clinic in the Department of Neurology. She has been involved in the field of augmentative and alternative communication since 1979.

Hank A. Bersani, Jr., is Associate Professor of Special Education in the School of Education at Western Oregon University. Trained as a special educator, Hank "fell into"AAC in the early 1970s as a first-year teacher working with students with multiple and severe disabilities who did not speak. These days he trains teachers on ways to intgrate children who use AAC into the full range of school activities, from classroom to playground.

Excerpt. © Reprinted by permission. All rights reserved.

My Varied Modes of Communication

- excerpted from Chapter 5, "Nobody Knows Me but Me, Myself, and I"

During those five years, from 1985 to 1990, sign language was my main mode of communicating. I guess my mouth got weak from not speaking and using the various parts of it. Maybe it was an after effect of mononucleosis, which I got for the third time earlier in 1990, just like when I was in high school. After twelfth grade, I dragged my left leg. After graduating from the university, communication became a problem. I would speak and hope they understood what I was saying, even trying to mime, even though I don't know mime. If that didn't work, then I'd fall back on the old handwriting thing. I'd hope they could read my chicken scratch!

In 1994 or 1995, it was arranged for me to try out new technology. At the time, it was new! I tried out an SL30 LightWRITER, which I nicknamed by voice or communication device. This was a godsend. It saved me an aching hand, and it saved me from frustration with meeting new people. On the other hand, I missed out on eye contact. It's sure lousy for people who are illiterate or impatient, though. Sign language is great because I can sign away and most people can understand me, but it's no good because so few know it. It would be nice if everyone could learn this creative language.

One reason why I don't specify which sign language I use is because there is a great big war between Sign Exact English, or SEE, and American Sign Language, or ASL. I understand both of these languages are American in origin. Me, myself, and I think this debate is madness. This so-called debate rages because no one is sure which is more beneficial to Deaf children learning English. I don't know because I didn't grow up with sign language. The languages I know are English, which is my native language; then French, which I don't use; then sign language. SEE is bulky and awkward. I was asked if ASL can become like spoken language. My answer was, "Can we do this to other spoken languages? I'm not sure. It's best to have a sign language interpreter. We can translate languages, but the meaning from the original language is always lost. WE can come close with ASL, though."

At my job for the government, my socks were knocked off! Someone got the idea to learn sign language, and in 1998 my supervisor told me she was attempting this great feat, along with others as well. Wow, I felt spoiled!

The phone is something I can't use. (I was trained to use the phone as a kid, though. This was when I had a few more decibels of hearing. I learned how the phone works, but it didn't catch on with me. Now, I've lost a bit more of my hearing. If I must use the phone, then I panic if I hear something on the other end, and I can't make it out.) I have a TDD, or telecommunication device for the deaf, which I use instead. However, not everyone has a TDD. The reason is it's expensive. I've noticed some public phones have a TDD now. My reaction was, "It's about time! I won't have to carry mine with me everywhere I go." The TDD public phones are not everywhere, though. I guess it costs more. To reach hearing people who don't have a TDD, I use a Message Relay. I've heard stories, though, of some of the operators on relay. Some don't say word for word what people say to each other, even though they're supposed to. I heard that once, an operator had phone sex while a deaf person was typing out a very long response. Like in every profession, there is the occasional bad apple. How do I know when the phone rings, as it often does? I have a flashing light system. When the phone rings for a call or for someone at the door, the lights flash. I have a television that has the caption decoder chip. This puts the dialogue on the screen. I'm still new with captions, so when a conversation goes by fast I have to decide what I want to do: get the dialogue or watch the actors. Hmm, big decision. I don't have much use for an alarm clock. I have one named Panther, my beautiful black cat. He isn't always reliable, but that's fine. I'm sure he will become reliable as he gets older.

Product Details

• Paperback: 288 pages
• Publisher: Paul H Brookes Pub Co (March 17, 2000)
• Language: English
• ISBN-10: 1557664471
• ISBN-13: 978-1557664471
• Product Dimensions: 8.9 x 6 x 0.6 inches
• Shipping Weight: 12.8 ounces (View shipping rates and policies)
• Average Customer Review: 5.0 out of 5 stars  See all reviews (3 customer reviews)
• Amazon Best Sellers Rank: #1,072,363 in Books (See Top 100 in Books)

Customer Reviews

Most Helpful Customer Reviews

5.0 out of 5 stars Speaking Up and Spelling It Out, August 15, 2005

By 

Cyd Hengge (Norman, OK) - See all my reviews
(REAL NAME)   

This review is from: Speaking Up and Spelling It Out (Paperback)

Speaking Up and Spelling It Out used an open format consisting of essays, poems and interview. Each passage starts with information about the author and most have a picture. The editors clearly state that this is not the typical book revolving around AAC use. Truly, I found the topic of AAC use to be secondary to the authors experience with the device. Every author speaks to having to create his or her own lives, virtually creating a new culture with the use of AAC's. I enjoyed the glimpse into the histories of these augmented speakers (editors terminology for people who use AAC's to communicate) who have blossomed through the development of communication. Each story is full of hope, humor, and heart.

Topics covered include the history of AAC's (from personal and development prospective), education, employment, public policy, multicultural issues, and my favorite, literacy. Several of the stories included bi-lingual strategies to championing their environment. Many of the authors felt that the struggle to be heard was what made them the fighters they are today. The augmented speakers talk about the most important issue is getting an AAC that suits the users need. The consensus is to use whatever is the quickest. Non-augmented speakers don't spend much time trying to figure out what an augmented speaker has to say. However, maneuvering around the professionals can be challenging as well.

This book is an excellent source for anyone wanting to know more about the AAC users experience. Therefore, I not only recommend this for family, friends, and other augmented speakers; but, professionals as well. Nothing makes a better trainer than to understand your population. I am using it as a tool for an augmented speaker that is strengthening his literacy skills.

5.0 out of 5 stars A wonderful introduction to ACC world, July 1, 2004

By 

Giuliano Pozza (Cesano Maderno, Milano Italy) - See all my reviews

This review is from: Speaking Up and Spelling It Out (Paperback)

I am working with AAC users and experts on a "pioneer" project in Italy (...). I'm not a subject matter expert (I have an engineering background). Through this book I got an idea of what does it mean AAC for the people who are using it.
The exposure is "easy-to-read" and pleasant even for "non experts" as I am and it opens your mind on a rich and interesting world...

5.0 out of 5 stars Insights on AAC from individuals who use AAC, January 31, 2003

By A Customer

This review is from: Speaking Up and Spelling It Out (Paperback)

This is an outstanding collection of first-person narratives on what it is like to use augmentative and alternative communication (AAC). Individuals who use AAC share their life experiences, describing both the "early years" as well as the life they enjoy today. They include both their successes and their frustrations, this book provides valuable insights on AAC from the people who know it best.