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Interview With the Editor

Scott M. Stoffel,
Editor, Deaf-Blind Reality: Living the Life

GUPress: Please elaborate on why you wrote this book? What do you hope it will accomplish?

Scott M. Stoffel: I see a lot of stories about deaf-blind people that try to sell the subject of the story as an “amazing” individual. These all follow a pattern with an intention to impress and inspire. They create a false image of life with multiple sensory disabilities. They also promote mainstream society’s notion that disabled people must somehow “overcome” their disabilities and essentially live like they don’t have any. Why do deaf-blind people have to be amazing? Can’t we just be accepted? I wanted to show the world what deaf-blind people’s lives are really like, all garnishes thrown out. This is the bare reality of our existence. People can gain a lot of understanding about how we think, feel, and live from this book. It’s especially important for anyone that is dealing with a deaf-blind person, whether a social worker, teacher, parent, friend, coworker, or someone in the community.

GUPress: Some of the original contributors dropped out. Do you know why? How did you find new contributors, and what were your criteria for including them in the book?

Scott M. Stoffel: I found all of the original members in a single on-line group for deaf-blind people, but some of them dropped out because they couldn’t handle the amount of work involved in the project. I needed each person to write articles for as many of the book’s topics as possible or at least give me the bare facts and review the articles I wrote up for them using the info they provided. People were eager to contribute at first, but when they realized this would take quite a bit of time, effort and patience, some just bailed out. Also, a few of them seemed to find it difficult to really open up and share their personal experiences. They kept generalizing, forcing me to press them for details they didn’t want to share. I frequently had to ask many of the contributors for more details. Some were willing to open up enough to show their realities; some were not. However, the personal experiences are what make this book a valuable resource, so I needed people willing to bare their souls.

When that first group shrank, I began searching other groups for prospective contributors. Aside from being deaf-blind, I wanted some diversity among the candidates. For instance, I had several folks with cochlear implants and wanted a few who neither had nor wanted the technology. It’s important to get both perspectives on an issue like this. I also wanted people with various degrees of sensory abilities and some with additional disabilities. Deaf-blindness in combination with other physical impairments is not unusual, as the cause for sensory disabilities is often neurological. So I wanted as much diversity as possible to illustrate.

GUPress: What advice would you give to parents of children who have been newly diagnosed with Usher syndrome or some other condition that will cause their child to be deaf-blind?

Scott M. Stoffel: They should read chapters 1, 2 and 3, for starters, and pay close attention to what the contributors say about how the actions of their parents and school teachers affected them. A major point that is continually overlooked by rehabilitation services is the critical importance of healthy social development of a child. All the emphasis goes toward academic success. But that’s only half of what early schooling is about for kids. If a child struggles to make friends and fit in because of disabilities, parents need to be aware this can cause significant psychological harm over time. There aren’t always appropriate schools or programs where a deaf-blind child could go and be more or less “normal” in a relative sense. In these cases, parents should look to find some kind of social activities where the child can interact with other deaf-blind children, occasionally. Don’t pressure the child to “act” like he/she has no disabilities or be deemed inadequate. Instead, let the deaf-blind kids know they aren’t freaks, that there are others not so different. Let them experience being “just one of the gang” sometimes.

14:10 Friday, October 19, 2012

What Life Is Really Like

Individuals With Both Hearing and Vision Loss Share Their Challenges About Everyday Living

“There is a prevalent misconception in modern society that if a person who is disabled accomplishes some goal, such as attaining a college degree or winning a sporting competition, the disability essentially vanishes, and life becomes ‘normal’ for the still-disabled person.” Editor Scott M. Stoffel makes this observation in his new book Deaf-Blind Reality: Living the Life. “This is probably the result of films and literature that conclude with the disabled main character achieving a goal at the end of the story, leaving the audience to assume the challenges have been ‘conquered’ once and for all. Unfortunately, the reality of life for people who are deaf-blind is not so simple.”

“Most people truly don’t understand what life is like for people who are deaf-blind, nor can they relate to what deaf-blind people go through,” notes Stoffel, who, himself, is deaf-blind. “That is the very reason I decided to create this book. I wanted to illustrate the real world of people who are deaf-blind through the actual life experiences of many deaf-blind individuals. That said, no attempt was made to tell extraordinary accounts of monumental achievement. The book instead deals with all of those unspectacular—but altogether daunting—challenges that never make it into the amazing stories, despite being of greater importance, because they pertain to everyday life.”

See directly into the minds of deaf-blind individuals and learn what they think and feel in various real-life situations. Read chapter nine, “Daily Life,” online now, and order your copy of Deaf-Blind Reality for 20% off with your exclusive subscriber discount. When ordering online, type “OCT2012” in the box labeled “use promo code” next to the checkout button. You may also order by mail.


In Deaf Epistemologies: Multiple Perspectives on the Acquisition of Knowledge, editors Peter V. Paul and Donald F. Moores, along with 12 noted scholars and researchers, examine the many ways that deaf people see and acquire deaf knowledge. Reference & Research Books News took notice of this groundbreaking volume stating, “Scholars of deaf studies, education, sign language, and other fields explore the acquisition of knowledge by deaf people from the perspectives of sociology and anthropology, history/psychology and literature, and education and philosophy. Among the topics are juggling two worlds, implications of diversity and deaf identity for personal epistemologies in deaf education, encounters with deaf heroes and heroines, collaborative knowledge building for accessibility in academia, and whether it can be a good thing to be deaf.” Read more about this new collection in chapter thirteen, “Can It Be a Good Thing to Be Deaf?”, and order Deaf Epistemologies online or by mail now.


In Discourse in Signed Languages, a stellar, international cast of cognitive linguists, sociolinguists, and discourse analysts discover and demonstrate how sign language users make sense of what is going on within their social and cultural contexts in face-to-face interactions Choice magazine recommends this volume for graduate students, researchers, faculty, and professionals while noting that the contributors “use various methodologies and approaches in order to arrive at a working definition of discourse analysis, a term that scholars use to describe language interactions in different settings and situations that suggest different meanings.” Also, the Journal of Deaf Studies and Deaf Education states: “For those who enjoy learning more about ASL [American Sign Language] structures and their forms and functions used by people in actual situations, this book will be enlightening and thought provoking. It will bring readers up to speed on the latest findings in the field of ASL discourse.” Read chapter three and place your order online or by mail.


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